1. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    #21 lavenderblue, May 27, 2015
    Last edited: May 27, 2015
    She was told to stop, yesterday, by the CPN. At that point, she'd been on the higher dose for around a fortnight.

    There's a 2012 paper here on sudden withdrawal after 12 months usage:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506829/
     
  2. Caz60

    Caz60 Registered User

    Jul 24, 2014
    253
    Lancashire
    Hi ,would just like to say that my hubby has attended clinic today and his titration has been amended from 20mg ,to 15mg for 7 days and 10mg for 1 month and a review before continuing .This is all down to sudden deteriorationl in weakness and shaking with a little bit high blood pressure causing severe head ache.All being well the correct dose will be found.Take care xx
     
  3. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    Hi Caz60,

    Can I ask how long it's been since your hubby was started on donepezil, what dose he was started on, and whether you have seen any kinds of improvement while he's been taking it?
     
  4. Caz60

    Caz60 Registered User

    Jul 24, 2014
    253
    Lancashire
    Oh sorry Lavenderblue,my hubby is on Mementine now.He has been on Mementine for 9months after trying Rivastigamin.
    My point was that it had to be done slowly.Initially he felt better for a few months then declined.Heres hoping that he settles down as with your situation also.xx
     
  5. nessy22

    nessy22 Registered User

    Nov 22, 2014
    42
    I have been following this Donepezil thread with interest - see also my earlier post. Mum is now on 10mg for 3 weeks. I did not see much change at 5mg but now she is more aware of her situation and constantly mentions that memory has got worse and she can't find words anymore which I can also confirm from conversations with her. She is not aware that the doze increased.

    I expect that the Community Mental Health nurse will come by to assess her soon but if things continue I don't see much point in continuing. Better to reduce the doze and wean her off. Does anyone have experience of this? Will things really go back to where she was, or has she moved on from that point?
     
  6. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    Hi Caz60,

    Yes, I did wonder whether your hubby was on a different medication because the dosages you quoted didn't seem to be the dosages I associate with donepezil (5mg and 10mg).

    As I say, it was the CPN's instructions that my mother should stop the 10mg dose for two days, before restarting at the 5mg dose because of the symptoms she was experiencing at 10mg (shakiness, increasing anxiety, marked increase in confusion).

    I don't know, as it wasn't discussed with me, but possibly because she had only been taking the donepezil for 3 weeks at 5mg and for 2 weeks at 10mg, coming off for a couple of days "cold turkey" as it were, to reduce troublesome side effects, before resuming at the lower dose, may not be as problematic as coming off with no tapering after months or years of continuous use.

    If it had been decided, yesterday, that after 2 days without the 10mg dose, my mother would not restart at the lower dose, or would be taking a longer break before resuming at the lower dose, I would have enquired whether we might expect any withdrawal symptoms after 5 week's on donepezil.

    But since she agreed to resume at the 5mg dose after a 2 day break, I did not need to raise this.

    But anyone titrating donepezil and experiencing an unacceptable level of side effects at either the lower or higher dose should seek advice from whoever has responsibility for prescribing and monitoring.
     
  7. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    #27 lavenderblue, May 28, 2015
    Last edited: May 28, 2015
    nessy22, I would also say that since starting on donepezil, my mother appears to have greater self awareness of the extent of her memory problems (which in any case, have markedly increased in line with the step up from the lower to the higher dose) and she has also been more inclined to voice concerns about the decline in her capabilities and for her future independence and quality of life, this last few weeks.

    However, she was given a diagnosis of mixed AD on the same day she was started on donepezil. So although she has never spoken to me about being given a formal diagnosis, or what that diagnosis was, or how she feels about the diagnosis, the fact that she has now been given a diagnosis may be contributing to her current level of self-awareness. (I am a long-distance carer/advocate and I am not present at CPN assessments and reviews or GP appointments.)

    Prior to the diagnosis and commencement of donepezil, I used to hear a lot of "Well, it's just old age." Now, it's, "Well, I never thought this would happen to me."

    So I can't be certain whether the donepezil may have lead to greater insight into the extent of, and implications for the decline in cognitive function or whether the simultaneous delivery of a formal diagnosis prompted this.

    If there are no further unacceptable side effects once she is established back on the lower dose, I expect the CPN may want her to remain on 5mg.

    But if there is no obvious improvement, it will be difficult for her to make an informed decision about whether to continue. None of us can predict to what extent the medication might slow down progression, even if no day to day improvement in her general cognition and functioning is evident to her or to those who interact with her.

    (And here I mean improvement in "real life" situations and day to day functioning - as opposed to scores on Mini Mental State or other formal cognitive testing.)

    For her age, my mother is considered to be in good health. However, she's already on three medications, plus one to three BP meds and now trying donepezil. She may have to resort to pain killers, too, in the future, due to arthritis.

    It adds yet another medication to the list she is already taking, with attendant risk for iatrogenic disease, drug interactions, unexpected short or long-term side effects etc.

    For example, donepezil can raise or lower BP. If her BP is too low or too high in the future, or unstable, is it the BP med(s) that need adjusting or might the problem lie with the donepezil (which is not prescribed or monitored by her GP, so there is cross agency responsibility here).

    The greater the polypharmacy, the more difficult it becomes to disentangle which of the medications might be responsible for any new troublesome symptom or whether any new symptoms might indicate a new disease that needs investigation.
     
  8. Fearnodarkness

    Fearnodarkness Registered User

    Jun 10, 2014
    38
    I came here looking for information on Donepazil, particularly side effects, how long it might be before they happen.

    Thank you for everyone who posts, it has been interesting to read.

    My MIL is old but in good health and takes no other meds other than eye drops for Glaucoma.

    She's literally just started on 5mg Donepazil on Friday. We had to remind her to take her second tab yesterday. We live far away so it's all done by phone (though we did go to the session with the prescribing psychiatrist - which wasn't as long or as detailed as i thought it would be). She's very resistant to having a carer come in to monitor her meds, but that will have to happen if it seems she's not taking them regularly.

    I read the Patient Information, which seemed to be loaded with side effects, partic. gastro disturbances. She's very forgetful, but she lives by herself and runs her household herself with a bit of prompting. I don't want to inflict sickness on her while trying to help. Does anyone have experience of this kind of side effect, and how long it take to show up?
     
  9. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello fearnodarkness welcome to talking point, my hubby has been on donepezil for 3yrs, he did have a few side effects for the first two weeks upset stomach, and feeling sick, it did ware off as the day went on. It certainly has help to slow up the decline of memory loss, without it l am sure he would have got worse much quicker, now he is in the late stages of Alzheimers but still takes it. Hope this is of some help to you. ☺
     
  10. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    #30 lavenderblue, Jun 5, 2015
    Last edited: Jun 5, 2015
    An update on my mother's experience of starting donepezil.

    Having experienced unacceptable side effects 12 days after stepping up the dose from 5mg to 10mg, which triggered a GP referral for rapid hospital assessment, she was taken off the donepezil entirely for two days, then restarted at the lower dose.

    She's been back on the lower dose (5mg) for 10 days, now, with no significant side effects. The extreme shakiness/tremor in her hands that she was getting on the 10mg dose seems to have resolved and she appears less anxious. At 10mg, she was very cognitively shot; that has improved to around the level she was at while on the lower dose.

    She had a visit from the CPN, today, who carried out another MMS test, which she scored well in. (I am a long distance carer/advocate and not present at these follow-ups.)

    It has been agreed between the CPN and my mother that she will continue at the 5mg dose and she has now been discharged back to the oversight of her GP. There will be a follow-up by the Memory Clinic in 6 months.

    The CPN had jotted some notes down for her to pass on to me and as far I am aware, nothing was said about assessing before 6 months to decide whether it was worthwhile her remaining on the medication.

    Although I receive copies of some paperwork relating to the Memory Clinic assessments, I was given no information at all on donepezil, likely side effects, expected outcomes, short and long-term efficacy etc. So I've had to do my own research on this medication.

    I understand that the "half-life" of donepezil is 70 hours.

    This document on administration of donepezil was on a U.S. medical site but I've seen the same text incorporated into literature for nursing staff in UK NHS settings.

    http://wps.prenhall.com/wps/media/objects/3775/3866436/npf_charts/ch20/Donepezil.pdf

    I don't have the references to hand, but on U.S. medical sites, I've read that if there is no perceived improvement within 3 to 4 months, determined by assessment tools in conjunction with family or carer/caregiver perceptions, then it may be decided to discontinue the medication.

    May1's original post had asked:

    "Can anyone tell me when donepezil kicks in? My OH has been on it for 3 weeks .Not noticed any difference yet..."

    Apart from the two day "wash-out" break before being restarted at the 5mg dose, my mother has now been on donepezil for 7 weeks.

    During this period, I've had daily phone chats with her and this is my impression, after 7 weeks. She does seem more motivated to do things, like phone old friends or to write letters. Apart from the 12 days when she was on the higher dose, she's mostly sharp on a minute to minute basis and is dealing competently with domestic admin, domestic chores etc. Her attention span may be a little better.

    However, I do feel that her short-term memory has been noticeably worse since three days after she first started the tablets.

    Correlation does not imply causation and she may have experienced a worsening, anyway, during this period, irrespective of what medication she was taking. However, given how "out of it" she was 12 days after moving onto the 10mg dose, it may be significant.

    We'll see how she goes over the next few weeks.
     
  11. Fearnodarkness

    Fearnodarkness Registered User

    Jun 10, 2014
    38
    Thank you to posters. I am glad Pamman's husband is benefiting.

    We've now got a wait till early September till my MIL is assessed again. She's been taking it for a week. Fortunately she hasn't suffered any physical side effects yet. It will be 12 weeks between starting until she is scheduled to be seen, but that is what the doctor wanted.

    Although I think she was going this way anyway, we are getting more and more "empty" phone calls from her, saying she is "testing" our number which she just remembers out of the blue, or wanting to talk saying she has not heard from one of us for ages. She also imagines that one of us has "been there" on a daily basis. I was disturbed to hear that lavendarblue's mother actually had a decline in short term memory, as my MIL's problem is very largely in her short term memory - she manages fairly well apart from that.

    We were given no information about Donepezil - I didn't even know it was the same as "Aricept" till I looked it up!
     
  12. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello fearnodarkness my hubby also has drops for Gluacoma, sleeping pill, anti-deppressant, and blood pressure pills, l do worry that he is on too much medication,, also Donepezil!!!
     
  13. lavenderblue

    lavenderblue Registered User

    Nov 2, 2014
    23
    UK
    #33 lavenderblue, Jun 7, 2015
    Last edited: Jun 7, 2015
    Hi Fearnodarkness,

    Like you, I'm monitoring/supporting my mother long-distance. I'm 140 odd miles away.

    12 weeks seems a long time without carrying out any interim review to assess how an elderly person is doing on this medication.

    Are you saying that having been started on Donepezil one week ago, your mother hasn't been reviewed since and isn't scheduled to be reviewed at all, until 12 week's time?

    Here's a Shared Care guideline. It's not from my area of the country but it may be of interest. It covers administration of Donepezil, Galantamine, Memantine and Rivastigmine. Here it suggests for Donepezil

    "Initially 5mg once a day, increased if necessary after one month to 10mg once a day (maximum dose)"

    "The specialist team should review the patient at around 12 weeks to assess benefit and review the dose. After the initial treatment period, regular assessments with a maximum of 6 months gap should be carried out by the specialist team using consistent methods and should include assessment of cognitive, global and behavioural functioning and activities of daily living."

    http://www.rcht.nhs.uk/DocumentsLib...cy/TreatmentOfDementiaSharedCareGuideline.pdf


    I remain concerned that there has been, in my experience, a worsening of short-term memory dating from a few days after first being started on this medication.

    As I've mentioned, she's had a couple of TIA like episodes since starting on Donepezil. It isn't known for certain whether these were TIAs or possibly silent strokes and she's suffered a step-down as a result, or whether it's the Donepezil, or whether she would have experienced this irrespective of either.

    This is why I would have liked her to have had a couple of weeks "wash-out" from the Donepezil, so we could see whether and to what extent she improved off the medication entirely. If she didn't improve, then she could have resumed cautiously at the lower dose. As it is, we won't know.

    I can't advise you, of course, but if she were my mother, I think I'd want to discuss with the GP any worsening of memory since starting on the tablets well before the 12 weeks is up.
     
  14. Fearnodarkness

    Fearnodarkness Registered User

    Jun 10, 2014
    38
    It does sound as if "12 weeks" is one of their landmarks. No there's no plan to review her, I have been told we can call their office if any problems, and it was the medical secretary who told me that when I asked ...

    A couple of days into the second week we are now running into problems as it looks as if even the blister pack cannot keep her on track with the days. (She was pretty good last week - she seems to have suddenly lost it, but these ups and downs are not unusual for her.) I am going to have to look for an automated release pill dispenser and possibly get someone from an agency to go and check on her, which she really doens't want. The phsychiatrist DID tell us that there is an automated dispenser which will only unlock on the right day ... but he didn't know what it was called! Nobody has mentioned anything about a community nurse ... I think to have anyone check on her we will have to get someone private.
     

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