1. May 1

    May 1 Registered User

    May 7, 2015
    9
    Surrey
    Can anyone tell me when donepezil kicks in? My OH has been on it for 3 weeks .Not noticed any difference yet.also how do I cope with aggression I have to walk on eggshells all the time just waiting for him to kick off about the least little thing. He refuses to give up driving. I spend my days and nights worrying. We have no family to call on so I feel very lost and alone.
     
  2. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello May 1 my hubby is on Donepezil it does vary how long it takes to kick in as everyone is different, l think it worked quite quickly for my hubby, maybe one month that was 2yrs ago, he did start to get aggressive 3months ago, he was then put on anti depressants, which has been very good results. My hubby stopped driving 3yrs ago, we nearly had a very bad accident l was so frightened that l took his keys away so he could not drive any more, you have told do what you have to do for your safety. Hope this reply has helped you take care
     
  3. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello May 1 l don't think Donepezil stops aggression, it just slows down memory loss due to Alzheimers.
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,662
    Salford
    Hi May
    I agree with pamann, Donepezil isn't a cure for aggression. Donepezil/Aricept are supposed to slow down the rate if decline down although whether it works or not is a matter of debate. It seems to be quite common that along with Donepezil an anti depressant is also prescribed a common one being Citlopram, that does seem to have improved my wife's mood a lot.
    K
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
    Donepezil is supposed to help with memory decline but interestingly my OH declared it made him feel "more positive" and I have since heard about it being a mood enhancer for other patients too, though not for everyone.
     
  6. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    109
    Manchester
    My husband has early Alzheimers and was put on Donzepezil in August it makes him feel more confident. He can do things better now like sorting money out and putting a plug on. When he first started it he put a switch on a radio. He has off days when he is a bit moody but most times it works well.
     
  7. reedysue

    reedysue Registered User

    Nov 4, 2014
    4,563
    Scotland
    Mum has been on donepezil 5mg for 4 weeks and so far I can see no difference, our Gp is going to increase the dose to 10mg on Wednesday.
     
  8. MLM

    MLM Registered User

    Jun 17, 2014
    130
    Manchester
    In terms of the driving, it is a legal requirement to declare his condition to the DVLA. He will be expected to have regular driving assessments or be offered to surrender his licence without this if he decides he isn't likely to pass an assessment. The DVLA also have a form which you can use to anonymously report concerns about a person's driving if they won't declare conditions themselves.

    Some people simply hide the car keys but if he is being aggressive I personally don't recommend that.


    Sent from my iPhone using Talking Point
     
  9. MLM

    MLM Registered User

    Jun 17, 2014
    130
    Manchester
    Donepezil unfortunately doesn't show any effects for some people. I don't believe it has slowed my father-in-law's decline. He ended up having a car accident (that wasn't his fault as it happens!) prior to the DVLA requesting his first assessment and he decided to surrender his licence. He wouldn't have passed the assessment anyway as he had become a dangerous driving due to distraction mostly and missing things like red lights, give way lines etc. and was always forgetting his seat belt too. Such a scary combination. Whenever I heard about a local accident I would worry it was because of him (he drove for a living too).


    Sent from my iPhone using Talking Point
     
  10. nessy22

    nessy22 Registered User

    Nov 22, 2014
    42
    Mum's been on Donipezil for 2.5 months now, dose went from 5 to 10mgs two weeks ago. I honestly don't see much difference in her memory ( certainly not better) except she seems to have an understanding of what is happening to her which she did not really have before. This makes her more worried and confused. Is it the drug or just the progression of the disease? She will get a memory test in a few weeks. Since she gets quite stressed by these I am not sure if it will tell us much.
     
  11. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    #11 lavenderblue, May 26, 2015
    Last edited: May 27, 2015
    Hi May 1 and others,

    I still haven't posted an introduction post, but in the meantime, a comment about donepezil.

    My mother, late 80s and recently diagnosed with mixed AD (AD with minor vascular involvement) was prescribed donepezil by the memory clinic around 5 weeks ago. She was started at the 5mg dose. After 3 and half weeks the dose was increased to 10mg.

    This has been our experience: After 3 weeks at 5mg, she did seem a little more motivated to do things, though I did not feel there had been any change in her memory.

    She's been on the 10mg dose for a couple of weeks during which there has been significant worsening of her memory and functioning.

    This weekend she also started to feel physically unwell: very trembling hands in the mornings, some other physical symptoms; memory pretty much shot, can't remember from one hour to the next whom she has seen, what was said, where she has been taken or for what reason; has made phone calls she can't remember having made etc. Also getting anxious and fixated about certain things. She retains insight that her memory has gone to pot this last couple of weeks and she isn't delusional.

    On Sunday, I contacted 111 for advice. I was concerned that the worsening confusion, the shakiness and general feeling of "not being right" might possibly be due to "rebound" from abrupt cessation of the old BP tablet, or a side effect of the new of BP tablet, or to a UTI or possibly due to the increased dose of donepezil.

    In the last three days, she's been assessed at the hospital (referred by the 111 duty doctor following phone assessment) and the hospital took her off the new BP med with advice to consult GP after the Bank Holiday about BP regime. No better this morning, so I arranged a domiciliary visit from her own GP (who isn't currently responsible for the monitoring of the donepezil, so he could not advise us on that). No indication of UTI, but a sample has gone for culture.

    Both she and I have had contact with the memory clinic CPN, today, and my mother has been told to stop the donepezil. She's having a domiciliary visit from the CPN tomorrow, when it will be decided whether to step down to the 5mg dose or to stop entirely. She'll be closely monitored over the next few days. CPN does think it likely that the donepezil has not suited her and that she should expect a return to her previous level of memory and functioning within a few days.

    So, so far, donepezil has not been a positive experience for her.
     
  12. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    It is a shame that Donepezil has not suited your mother, it did wonders for my hubby, maybe the GP can give her something else.
     
  13. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    My mum was put on donepezil and was on it for about two months. She developed what seemed to be a lack of balance and kept leaning on the wall and shaking. I was very concerned about this - but thought it just a symptom of the awful disease. however we found her blood pressure had dropped quite a lot (she is on tablets for high BP as well). she was also very anxious continuously. The doctor at the memory clinic changed her medication to memantine (which actually raises the blood pressure a bit) and she has been so much better.
    It is very difficult to know how any of the medication is slowing the symptoms of the disease down - as we don't know how things would be without it. But I just feel this is a situation where we need to trust the professionals
     
  14. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    140
    Salford, Lancashire
    My Mum was on Donepezil for a month - first two weeks fine then the second two barely got out of bed during the day. If she did she went back after 1 hour max, but got up in the evening (when effects of the previous nights medication were wearing off). The memory clinic consultant wanted us to try for a month without any meds to see how Mum gets on - that month is nearly up and there has possibly been a very slight decline, but I would rather have Mum at least up and about and able to enjoy things (but possibly faster decline) than stuck in bed with no energy to do anything at all.
     
  15. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    #15 lavenderblue, May 27, 2015
    Last edited: May 27, 2015
    Hi pamann,

    Yes, it is indeed disappointing but I'm pleased that it helped your hubby.

    My mother is not under the GP for the prescribing and monitoring of donepezil.

    She was GP referred to the local memory clinic service for assessment. The clinic staff carried out a domiciliary assessment and ordered a CT scan and it is the clinic's consultant (whom she has never seen) and the community psychiatric nurses (CPN) who are currently responsible for assessment, confirming a diagnosis and titrating any medications the clinic suggests she might try.

    At some point, the monitoring of any ongoing medication will be transferred to the GP surgery, and then the memory clinic will review her on a six monthly basis - but we are not at that point yet.

    However, I was told yesterday, by the GP who made the house call, that although the surgery currently defers to the memory clinic team, if we have any issues with the memory clinic regarding current or future management of any medication the clinic has her on, to get back to him and he will liaise with them.

    If my mother is put back on the 5mg dose, today, perhaps we might see some improvement after a few more weeks.

    But the way she has been this last 10 to 14 days (whilst taking the 10mg dose) has rendered her barely well enough to be living on her own, so it may be decided to take her off it completely - I am hoping she will be taken off.

    (She could possibly try 5mg again if she wanted to when she is back to what is more like "normal" for her.)

    I advocate for my mother from a long distance (which is fraught with communication problems, especially given the current state of her memory, and I am not the primary family member contact for the CPN) but the CPN is planning to update me this afternoon, after he has decided how to proceed.

    I shall be asking whether the recent morning hand trembling might be an extrapyramidal side effect from the higher dose of donepezil.

    She has also had two episodes of TIA-like symptoms since she has been trying donepezil for which a GP ordered ECG, bloods. An appointment for an echocardiogram is also expected within the next four weeks.

    She's been told by one GP at her practice that these TIA-like episodes may have been "muscular". But I was advised by the different GP, yesterday, that any future TIA-like symptoms should continue to be treated as a potential TIA/evolving stroke until otherwise ruled out. The 111 triage nurse also thought these sounded like possible TIAs.

    Donepezil can cause muscle spasms. So it's not known for certain whether these transient symptoms may have been a side effect of the donepezil, were TIA associated or are incidental symptoms of little medical significance. As the 111 triage nurse said, there is a lot going on here: trialling donepezil, while being taken off one BP med and being put on another, having the new med then stopped by the hospital and experiencing several as yet unexplained symptoms which may or may not be related to (or being exacerbated by) the donepezil.

    I have suggested that she considers coming to stay with us for a few days so I can keep a closer eye on her and also feed her up a bit, but the CPN wants her to stay within his area so he can monitored her until she regains her previous level of memory and functioning. I can't easily stay with her due to carer commitments within my own family.

    I should know more later today.
     
  16. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    Hi beverrino,

    I'm interested that you mention your mum's shaking and increased anxiety.

    Over the last three days, my mother's hands, in the morning, have been so shaky she cannot write properly or hold a cup of tea. This morning, she says the hands are not so bad, but she has a feeling of general anxiety - as though she's done something bad, she says. She's occasionally mentioned this in the past, usually in the mornings and associated with her head feeling odd. She used to be on three BP meds, but after she was taken off a long-standing diuretic, a year or so ago, she didn't seem to suffer so much, not until this last few days.

    She's currently on just the one BP med and yesterday her BP, as taken by the visiting GP, was lower than mine.

    I don't know much about memantine as an alternative to donepezil but I will look into it, thank you.

    lavenderblue
     
  17. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    Hi lavenderblue
    there was a marked improvement in her following the change to memantine - they were concerned it may raise her BP but she has been monitored for 3 months now. She is a lot steadier on her feet, I was worried in case she had a fall, but this has improved dramatically. Her handwriting is much better also. I was told the donepezil may have been the cause of her BP lowering and causing the anxiety and shaking. I hope you can sort things out for your mum. The disease itself is bad enough and I wouldn't like to think the medication was affecting health in other ways
     
  18. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    I'm pleased your mum has seen improvement following a switch to memantine. I hadn't considered that her BP might be fluctuating.

    I see that shakiness (tremor) is listed on some Patient Information sites as a potential side effect (I can't post links yet - not enough posts).
     
  19. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    After a two day "donepezil holiday", my mother has been reviewed, this afternoon. She has apparently agreed to go back on the 5mg dose, as from tomorrow. She will be reviewed again, next week. She is feeling a lot better, physically, this afternoon, but the memory is, in my experience, not back to the level that was "normal" for her prior to starting on the donepezil. I would have preferred to have seen a longer "holiday" - maybe a week's gap before going back on the 5mg tablets, for a better "base line", but it wasn't possible for me to be present to suggest this. So, we'll see how she fares at the lower dose, again.
     
  20. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
    When you're on 10mg you shouldn't just suddenly stop. Two days probably won't do any harm but the general wisdom is to reduce gradually.
     

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