1. mandyp

    mandyp Registered User

    Oct 20, 2004

    Mum has now been on Aricept for 4 weeks, dosage increased over the weekend. Dad and I both feel that (sadly), she's got worse, not better.

    Hallucinations are worse and she seems a little more disorientated than usual, but we're not sure if it's coincidence that her drugs have changed or this would've happened anyway.

    I feel a little gutted, had really hoped this one would make some difference, even just for a little while.

    Since Mum's had everything else, is it likely that they'll put her back on drugs she was on before (should they decide that the Aricept is not appropriate), or will they just leave her with no drugs at all now?

    I can't bear the thought that that's it, there's nothing left to try. She's just too young for this and it's too much for Dad........sorry, just feeling a bit down,

  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Mandy,
    Sorry you are feeling so low tonight. It's so hard for both you and your dad; so many spoilt dreams. It's OK to feel sad for what you have lost; I don't know much about the drug regimes, mum never had them, I don't know if there is any delay in them working, if there has to be a build up in the system.
    So Mandy, feel down, but then get up tomorrow determined to make the most of another day - that picture of your mum and daughter is beautiful!! There are still good times ahead - not the good times you had hoped for - but good nevertheless.
    Take care.
    Love Helen.
  3. Kayla

    Kayla Registered User

    May 14, 2006
    Maybe the doctors need to adjust the dosage to get it just right, and it also might upset any other drugs being used. My Mum has taken five or six months to stop crying much of the time and I think they've had to vary the combination of drugs given and change the balance slightly. I don't know what she is taking now.
    My son is a research biochemist and he says that as well as developing new drugs, the big companies also investigate to see if existing drugs are effective against other diseases. There may be other drugs which haven't been tried yet and perhaps a little more time is needed for the new prescription to work properly.
  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    More general question on Aricept

    If I may latch onto this thread, may I ask for anyone's experiences as to how long it takes before any appreciable benefit is noticed for someone taking Aricept for the 1st time?

    My Mum has been taking them (when I remind her!) for 14 days now. I realise some meds can take weeks to get into the system & make a difference, but so far ... no change. ( I do realise that it won't turn the clock back, but I was hoping it would reduce the anxiety).
  5. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Lynne hi,

    I am not sure you can see a difference - I do not remember seeing one - It 'apparently' just slows the progress down but have no idea how that's quantified... Ebixa you can see a difference after a few days and Tiapridal after about 48 hours. Tiapridal reduces anxiety, Hallucinations, I think amongst other things and Ebixa makes some of the mist go away...
  6. cathy z

    cathy z Registered User

    May 23, 2006
    dear lynne, sorry your having a hard time, my mum 's been on aricept for 3 weeks now. the consultant said that if it works it takes memory back to how it was 6 mths. to 1 year ago and then it continues to deteriorate at the same rate as before. Her g.p. said it can take 2 months to work. she is only on a half dose (5mg) for the first month and then it goes up to 10mg. I'm not sure if memory's any better but her mood is brighter,why not ring your mum's g.p. for advice, best wishes cathy
  7. mandyp

    mandyp Registered User

    Oct 20, 2004

    Thanks Amy:) I find strength in seeing Mum and my daughter together, while feeling sad at the same time, the weather this weekend was so good and brightened everything up. It's hard when you come back down with a bump!

    Interesting to see how long it takes for Aricept to work, I wondered because most of the other drugs Mum has had we should've been able to see some sort of difference in a matter of days.

    Perhaps she's declined a little because of the change in drugs she's had and now she's on the larger dose we'll see something. I just keep hoping for a wee bit longer with her and it feels like it's dwindling all too quickly.

    Thanks for all the posts:)
  8. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I think the psychiatrist who prescribed Aricept for my mother should have realised she was not competent to manage her own medication.

    And as she went downhill and died just after starting Aricept, someone should have investigated a possible causal connection.

  9. HLon

    HLon Registered User

    May 30, 2006
    takes time

    hi Mandy,

    I think anticholinesterases eg aricept take about 4 weeks to start working, as it takes a while to moderate the brain's usual patterns of activity - it works by decreasing the amount of acetylcholine that's broken down between nerve endings in the brain so that there's more there, which helps sustain memory ability. learning etc.

    The hard part is that it's something of a slippery slope ie the disease is continual - aricept doesn't prevent it from advancing, but slows it down and helps maximise the potential that's left, so it can help up to a point ie while those neurones are still working well enough to benefit. It's also hard to measure how it helps a particular person ie you can never quite know how they would have been without it. My mum's recently come off aricept as she'd declined too much to be on it any longer (counterintuitive I know) and they'd have put her back on if she'd showed a dramatic decline (whatever that means - as far as I'm concerned it's dramatic enough already) as this would have shown it was having an effect still.

    Another thing to remember is that there are some side effects, which may be more prominent as first as the adjustment happens, so again, give it a few weeks.

    I hope you do notice some difference, and if not that you can draw some small comfort from the fact that you've tried the options available or that it may be slowing down the deterioration even if that doesn't feel really noticeable to you. Thinking of you.

  10. Lynne

    Lynne Registered User

    Jun 3, 2005
    #10 Lynne, Jul 7, 2006
    Last edited: Jul 7, 2006
    Hi MandyP

    Well, it's now about 3 weeks since you started this thread, and my Mum started to take Aricept (5mg per day) 12 days before your Mum did.

    Have you noticed any beneficial effects yet? Are her hallucinations reduced at all, or the anxiety? I would be interested in any feedback (from anyone) for comparison purposes. I appreciate that it's all guesswork as to whether 'xxx' or 'yyy' would or might have happened anyway, but so far my Mum still seems to be getting worse so far as short-term memory is concerned. Her anxiety seems to have reduced, but that may just be because the visitors we had have gone home now.
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Aricept and other drugs

    The thing we found with Aricept was that we didn't really notice any real differences, BUT as it is said to stave off the disease, slow it down...Dad kept taking it, for how were we to know whether if he went off it, he may have been far far worse than he was on it.

    Its a tricky one, and I guess the effects it shows would depend on what stage the dementia sufferer started taking it. It was one of the first drugs Dad started taking...so we really wouldn't have known if it improved him back to a stage of say 6 months earlier, because at that time, he would have his good days and bad days...so was he back to the 6months earlier good day, or bad day. Even now, 6 months earlier, he was about the same as he is now....for us to have been able to see a difference when Dad was taking it, he would have to have a drug that took him back about 2yrs.

    Thats the sucky thing about dementia drugs, you don't know most of the time if they are working or whether your loved one's new behaviour that may have coincidentally started occurring sometime around when the new drug was started is just another facet of the disease.

    Like Michael said...the only drug we saw a 'real' difference with was Ebixa but for us, that difference did not last long enough and the absolute excitement to get him back for a few weeks made it hurt even worse when he fell back down to right where he had been before it, and may be even lower, a few weeks later.

    I so know how this feels, and wish I could make it better for you...and me.

  12. Lucille

    Lucille Registered User

    Sep 10, 2005

    Hi Lynne, Nat et al

    My mum's been taking Exelon since mid May. 3mg a day. This is going to be increased 'soon' ... how soon I don't know. Mum seems to be better than she was. I've just had a phone call with her which was probably the best we've had in about six months or so. She remembered what plans she had for tomorrow, that it was somebody's birthday and she needed to get a card. In the past she's just said she was doing nothing. Probably because she couldn't remember. Whether tomorrow she'll remember the card is another matter. :) There were other things we've discussed which she didn't seem as vague about and she certainly seems brighter in herself. (It could be the damson gin I brought her back from holiday!)

    Whether it's the rivastigmine she's taking or the fact that more than 12 months down the line, she's finally started to accept things so is less frustrated with herself, is another matter. Interestingly, when the CPN said to mum she was happy with mum's progress and then said, 'but we're going to increase your dose', mum questioned this. (No flies on her that day, then!). So, I guess in between all this rambling, the answer is, I don't know if the tabs work or not. I like to think they're slowing it down and that they're giving me back my mum, at least for now, anyway.
  13. connie

    connie Registered User

    Mar 7, 2004
    As with all medications there are so many variables, so will just tell you Lionel's scenario.

    He was diagnosed with AD just after his 60th birthday. Right up to the day of diagnosis he was in full time employment, travelling from the East Coast up to London by train. He was advised to take early retirement, and prescribed rivastigmine (Exelon), rapidly progressing to full dosage.

    What was the difference.........who could tell. His secretary and other colleuges
    had been covering for him at work, and once he was at home full time, we crammed as much into life as we could (on borrowed time I guess).

    Now, nearly 5 years on, I can look back and really see the difference. Indeed the marked deteriation has been in the past twelve months. Did the medication hold him, or how would he have been without?, we shall never know.
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #14 Grannie G, Jul 7, 2006
    Last edited: Jul 7, 2006
    My husband was presribed Aricept. He developed side effects almost immediately---Hallucinations, disturbed sleep and an increase in confusion, all happened in a most dramatic way. We persevered for 5-6 weeks but the side effects became more and more disturbing. He was weaned off Aricept and tried on Reminyl and immediately developed exactly the same side effects. The doctor said he was very sensitive to these drugs.
    I felt we should really give them a good try because of all the publicity re. Post Code prescribing, and I felt we were lucky to be given these drugs. My son is a Pharmacologist and he was anxious about these prescriptions from the start because he felt they clashed with the anti-depressants my husband was taking. I did mention this to our GP but he doubted this and we didn`t want to antagonize the Medics who had been so good. It did put us in a tricky situation though. I wonder how many of these awful, frightening side effects are due to different drugs disagreeing with each other.
    Needless to say, I didn`t want to put my husbavd through any more of these trials, so he just takes anti-depressants now and we leave the Alzheimer drugs for those who benefit from them.
    I didn`t realize, until I logged in to TP just how many people suffer these side effects, but my son said these are really strong drugs.
    Regards Grannie G
  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    Thanks Folks

    I appreciate your input, although I find it disturbing that several of you have (in effect) said that Aricept didn't help. Mum should have her 2nd assessment in the next 10 days (1st one since starting on Aricept) so I'll feed-back my observations to the consultant & ask about either increasing the dosage or (preferably?) possibly changing to Exelon. As he seems quite open-minded, I might even show him the results of this thread.

    Would still be interested in any other observations (for or against) if anyone has any to add. Thanks again.
  16. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Lynne,
    Our experience was as follows:
    Husband was prescribed Aricept in July 2000 (on private prescription until it became available on NHS a couple of years later). We were unable to determine a particular improvement, but were told that the aim was to maintain what he had for as long as possible. His dose was increased from 5mg to 10mg, and he continued taking it for 5 years.
    There were no side-effects, but we had no yardstick to measure the effect of Aricept. However, within a week of being taken off it last August, his decline was shocking to say the least ......
    Thank heavens we now have Ebixa, as this has given us back a little bit of what we had lost, though by no means all of it!

    Good luck!
  17. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Our experience was similar to Nan's.
    Prescribed 5mg increased to 10mg,paid for private scripts until they became available on the NHS.
    This was started 11/12 years ago.
    No very noticeable improvement,but maintained the situation,until about 2 years ago.
    We now have a very slow deterioration but it is now 11/12 years on Aricept.
    When Peg hit the bottom line on the memory test,our consultant would not stop the tablets,he said if we did there was no going back.
    Do they work? In our case I think yes.
  18. twink

    twink Registered User

    Oct 28, 2005
    Cambridgeshire UK

    Steve has been on Exelon for almost a year now Lynne and I have no idea how he would be if he wasn't on it but he's certainly got quite a lot worse since diagnosis last August. He takes 2 - 3mg tablets a day. That is what he started on, it's never been upped. Guess it might be one day but that hasn't been mentioned yet.

  19. connie

    connie Registered User

    Mar 7, 2004
    Hi Lynne, as I understand it the main reasons for changing from any one of the dementia drugs (i.e Aricept, Exelon, Galatamine) to another is usually because of tolerance in the individual.

    I know of two others who started on Exelon, one who had to come off immediately because of sickness etc and indeed could not tolerate Aricept either, so is now on Galatamine, and the other who could not tolerate the higher dose of Exelon, so is now on Aricept.

    I was told that, whilst slightly different, there was no one drug better than another.

    Know this is not what you want to know, but maybe need to know. Love,
  20. Lynne

    Lynne Registered User

    Jun 3, 2005
    Thanks again everyone.

    As you say, we come here for what we need to know, (apart from the superb moral support and friendship) knowing that what we want to hear isn't a possibility.

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