1. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Hi, this is my first visit to this forum, my husband was diagnosed at the age of 60 he is now 65 because of the deteriation over the last few months I have been asked whether or not I want to keep on with his medication (Aricept). How can I make this decision and what will happen if I do stop medication? Will it be just the same as if I keep on with the medication. Any thoughts on this would be appreciated
     
  2. Chesca

    Chesca Guest

    Hello Doreen

    Welcome to TP.

    In my own experience, my Mum has AD, Aricept was only prescribed for just over two years when it ceased to be of any benefit - according to the consultant (and to us - it was obvious). In fairness, Mum was a lot older, late seventies, when she was prescribed the drug and the middle to late stages where not too far in the offing. But, there are many people on this site who have many positive experiences of Aricept and other drugs over longer periods of time and I'm sure they will let you have the benefit of those experiences. There are also many fact sheets available through the Alzheimer's Society on this site.

    Reading through your post, it is not clear who is asking you to make such a decision. How are you expected to make such a decision without being armed with all the facts? What are the options? Is the Aricept any longer of benefit to your husband? Who is throwing the ball into your court?

    I don't think this is a decision that should be left to you alone without adequate medical advice and it is not fair to ask you to make such a decision without that information. Perhaps you could arrange a meeting with your husband's consultant to discuss the options and to establish the next stages of any medical treatment or other support should Aricept no longer be suitable.

    This makes me so mad. Why are people still being left in the dark by some of the medical profession about such issues with a seemingly cavalier approach to such a devastating illness? Take no notice of me - I'm on my hobby horse. I'll shut up now.

    In the meantime, keep in touch on this site wherein you will find a lot of support and useful advice from other members who have all been there one way and another.

    Kind regards
    Chesca
     
  3. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Hello Doreen

    Everyone is different, aren’t they? No two people react the same, my husband was a lot younger than yours when he was on Arisept, it did not suit him so he was not taking it for long his memory scores went up after he came off, but he seems to be the exception not the rule.
    Keep posting it’s good to talk.

    Anne
     
  4. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Dar Anne,

    Thank you for your reply, yes everyone is different and that is the problem, my husband reacted very well to Aricept but now it seems it is not being effective, and the hospital feel that maybe coming off will help with the aggression he has, but will it? or will I be making it worse for him?

    Doreen
     
  5. Chesca

    Chesca Guest

    Dear Doreen

    Yes it is a risk, but perhaps they may be thinking of something else that may help calm the aggression in the event that withdrawal of Aricept does not have the desired effect. It is a horrible decision to have to make, but hopefully not irreversible, try to hold on to that.

    Best wishes
    Chesca
     
  6. Colin Cosgrove

    Colin Cosgrove Registered User

    Dear Doreen,

    Aricept can help many people, but usually for a limited time. Withdrawing treatment should be a medical decision, and should definitely not be left to you to decide, but it is good to hear that they are allowing you some input into how your husband’s treatment is managed.

    If Aricept is no longer helping your husband, then the hospital may have to take the decision to withdraw the drug. However, if it is still helping to some degree, but his aggressive behaviour is causing concern, then that makes the decision more complicated. High doses of Aricept can increase agitation in some people, and it may be that reducing his dose could help, but of course, that could reduce the benefit as well.

    It is very important that the hospital talks through the consequences of any decision with you – they will have some knowledge of your husband’s condition, and may be able to give you an idea of what to expect when the Aricept is withdrawn. You should also ask them what their plans are for his care after withdrawal of treatment – if the aggression continues, for example, what would they do about it?

    There is a drug called Ebixa that can help people in the middle to late stages of Alzheimer’s disease – you could discuss with your husband’s doctor whether it could be useful for him. It does not work for everyone, and is not always easily available, but if the doctor decides to withdraw Aricept completely, your husband may get some benefit from Ebixa.

    Alternatively, if the Aricept is still helping, and the hospital is more concerned about your husband’s increasing aggression, they could try reducing the Aricept, not withdrawing it completely, and introducing a low dose of Ebixa at the same time. As the two drugs work in different ways, he could still get some of the benefit of Aricept, as well as the effects of Ebixa. Again, this is the doctor’s decision, but it is worth discussing with them. There is more information available at http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm

    This is not a simple decision, and I’m not sure there’s a wrong or right choice, but the hospital staff should keep you informed about what they are doing, and why.

    Do keep in touch with the people on this board. They can be a great support.

    All the best,
    Colin.
     
  7. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Dear Colin,

    Thank you for your reply, there were many important points in your reply, and I will take them all on board, I must add that there is at the moment no pressure, just something I must think about. Do I want to have the aggression or try to ease it? But I ask myself at what price to my husband. I did mention the new drug but seemingly in this area at the moment it can only be prescribed privately. Thank you very much for finding time to reply.

    Doreen
     
  8. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Doreen
    my wife has been prescribed Aricept for seven years now,do they work?Who knows.
    She was older than your husband when they were prescribed,but we have managed until recently when a little aggression is creeping in,verbal that is.
    I did not understand the statement by one member about high doses of Aricept,there are only 5mg and 10 mg strengths and I believe after the initial 5mg the consultant may increase to 10mg.daily.
    In our case it will be the decision of the consultant if the treatment is with drawn.
    My wife's condition is deteriating slowly,but what if she had not had Aricept?
    Regards
    Norman
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Doreen, Colin's reply was very good, honest and in depth. It is good you are being included in these decisions, what I used to do was turn the question around a bit. I'd ask, "If it was your Parent/partner what would you do?" This usually gave an oportunity for discussion and then an informed choice that the whole team could agree on was put into place. This is a horrible illness and sadly one that at present has only one outcome. It is important that you not only do your best for your husband, but also that you don't beat yourself up trying to fight a battle that we all lose in the end. Sorry, I didn't mean to sound harsh, but you sound so caring that you could run yourself into the ground over the medication issue when really, all that matters is that both your husband and you cope with these issues in the best way for you as a couple. Obviously aggression is not going to help here, so in my book that would be the main issue to try to ease. Love She. XX
     
  10. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Hi Sheila,

    Thank you for your reply and I know what you are saying, BUT (and isn't there always one of those) you are right, I know I have to think of myself as well, but it is not easy as you know, I will eventually take the hospitals advice, at least they are giving me the chance to say what is best for me, and in the long run better for my husband who is deteriating very rapidly at the moment. We have managed for 4years since diagnosis in fact the time before diagnosis was the worse time because before Aricept it was physical aggression not verbal, the Aricept stopped that, and I suppose in my mind i am frightened of that rearing its ugly head again.

    Once again thank you for writing to me I have only just found this web site, my computer skills leave a lot be desired.

    Doreen
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Doreen, yes, the time before diagnoses is a nightmare, for both of you. The sufferer, trying desperately to hold on to normality, using every prop they can just to stay where they are and not drop another notch, desperate to be in control and not to let their loved ones down, oh boy is that hard! Then, theres the carer(s) seeing the decline, desperate too, to pretend it's not happening, this causes both to argue when things go wrong etc. etc. I hate it, oh how I hate this disease. Once a diagnoses is reached, regardless of whether the sufferer is aware or accepts it, we as carers know what the score is and we then have to face it as best we can. We are all different, but we are all only human and when our loved ones suffer in a way we can do nothing about, we are at our most vulnerable. Please never feel alone, you can say anything here, online or in a pm to us as fellow travellers, thats what tp is for, what/how ever you feel, someone will be able to empathise, we care, that's why we post on tp. Oh, and never worry about your pc skills, mine are abysmal too, you found us, that's the main thing! Thinking of you, love She.XX
     
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,704
    Female
    Dundee
    Hi there - my husband is older than your (73) and has been on Aricept for 3 years now. It seems to suit him very well and his scores on tests are remaining constant when we go to the memory clinic every 6 months. His moods have improved greatly since he went on Cipralex (I know it has another name but forget it at present) for depression around two years ago. I would say that this has made things much easier for both of us - my husband's frame of mind is much more as it used to be since taking this medication - I wouldn't like that to change again!

    The consultant seemed happy enough to stick with the Aricept as long as things remained constant - I got the impression she wouldn't take him off Aricept until there was a noticeable decline in scores - indeed she didn't seem to feel she would consider any change unless things became drastically different. She also seemed happy to leave him on the Cipralex although did say she might consider easing off on this at some point - I'm not sure if this is a good idea though.

    It's not easy is it? I often feel we are at the mercy of what the consultant says - who am I to say otherwise!? I just count my blessings that things have been on a reasonably even keel over the last year or so.

    Take care
    Izzy
     
  13. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    I think Sheila's got the crux of it, to my mind - what you really want to know is what's the best thing to do, and this question focuses down to that.

    My own thought would be that if donepezil (Aricept) was doing a lot of good, it would be worth continuing.

    If it's doing a little good but is at 5mg dose, then I'd want to go for the maximum (10mg) dose and see if that helped more.

    If it's doing very little or nothing now, then there's little point in continuing it. The drug is pretty safe, but does have side effects and some risks, so if you're getting benefit then this outweighs the risks. But if you're getting no benefit and just risks of harm then, obviously, I'd not want my nearest and dearest having the tablet.

    If the drug is stopped, what then? 65 is young and I'd argue, strongly, that drug treatment should continue. What drug treatment? 2 things spring to mind.

    1) If the drug donepezil (Aricept) isn't helpful now, then it's worth changing to another anti-dementia drug (galantamine or rivastigmine) as such a change will often be helpful.

    2) It might well be worth adding in memantine (Ebixa), but as you say it's often not available yet.

    Lastly it's worth the doctors' reviewing your husband's general health since changes in our health (e.g. thyroid changes, infections, Parkinson's disease, rheumatic conditions) and changes in medication all can affect how sharp our minds are, and can often be improved, so certainly's worth looking at if things have changed so markedly over such a short time.

    Best of luck with it all.
     
  14. Dan4274

    Dan4274 Registered User

    Dec 8, 2004
    5
    Near Liverpool
    Hi Doreen,

    My Dad was diagnosed with probable AD roughly 6 years ago. He was prescribed with Aricept and then had the dose increased at a later stage. In my Dads case, the drug had a small benefit in the early years. However now that he isnt taking it(he refuses), or at least not on a daily basis, it has no effect. This is what is now worrying me. In the past few months he too has become verbally abusive and voilent and occassionaly both and in public.
    We now give him a medication that helps with this called seroquel. Although my Mum doesnt like giving him this as it makes him very sleepy. I think that we will be making a similar decision regarding Aricept as well. I know that the drug is very expensive and in my Dads case it really isnt working.
    I hope that the aggression is just a stage that hes going through that will pass. Everytime I witness it I hold my breath and say (to myself of course) "its not him, its this *&^%$ disease!"I find that this helps.
    When Dad was diagnosed we also decided to get a pet, we got a cat (Betsy) and this has also had a really positive effect on his mood. He doesnt remeber her name but thinks the world of her and she follows him around the house. The only drawback is that Dad tends to wonder outside and Betsy follows him. Ive many times found Dad in other peoples gardens looking for her, luckily we live in a small road and the neighbours dont seem to mind!
    Anway I hope things calm down and you have a good Christmas!
    Bye for now
    Dan.
     
  15. robslar

    robslar Registered User

    Dec 28, 2004
    9
    Virginia, USA
    Hi Doreen,

    I'm new to this forum so I'm hoping I'm doing this correctly. When my husband was first diagnoised he was put on Aricept, was on it for only a few months then was put on Execlon. Neither seemed to be doing any good, and at that time my husband was still coherent enough to make his own decission about taking the meds. He decided why spend good money on something that isn't working. Much later when he could no longe make rational decissions he was put on the new drug Namenda (that's what it's called here in the US). I dont think that it's working any better for him, but I figured what's the harm in giving it to him as long as it's not hurting him.

    The Alz's site I frequent in the states have some of there loved ones on Aricept and see a difference in them. I guess it's pretty much guess work, since some of the medications will work for some and not for others.

    I certainly hope you find the answer that's right for you and your loved one.
     
  16. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Dear Robslar

    Thank you for your interest, my husband hs been on Aricept now for 4 years and at that time it really worked, and continued holding his test scores between 24 and 17, then suddenly six months ago he only scored 15 and it has been downhill ever since and his last test at the beginning of December he struggled to score 6. Also his aggression is beginning to creep back into our life, which according to the hospital could be because the aricept is no longer doing its job, and in fact aricept could now make the aggression worse.

    Sometimes it appears to me a lot is hit and miss even by the professionals.

    Doreen
     
  17. robslar

    robslar Registered User

    Dec 28, 2004
    9
    Virginia, USA
    Hi again Doreen

    How old is your husband? My husband will turn 57 in June of 05. He just saw his neurologist a few weeks back and scored a "3" on the mini test he was given.

    My husband Larry, now shuffles his feet when he walks. Talks jibberish most of the time, and constanly wanders about the house all hours of the day and night. Right now I'm trying to get his neuro to give him a sleeping aide. Nothing over the counter seems to work on him so I'm hoping if he's prescribed something stronger we can both get a goods nights rest.

    This has got to be the hardest thing I've ever had to do. And for the most part I'm doing it alone. He has a son, that comes by only when he wants something, and advoids my phone calls (he has caller ID) if I call him for help with his dad. My only saving grace is my daughter who does so much for me now since it's so hard going anywhere with him.

    My prayers go out to you as you struggle with this. Hope that he Dr's can find a middle ground for your husband, that will give you both some peace.
     
  18. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Hi Robslar,

    Thank you for reply, my husband is now 65 he was 61 when diagnosed. He also shuffles around and can only go out in a wheelchair, which nI will only do when my youngest daughter is with me it is easier with two of us as it is quite hilly where we live. The nurse has been today from the hospital and has advised me to go to the GP for something to help with his sleeping, I am taking him tomorrow. I agree I too have never worked so hard, it is certainly not what we planned for our retirement, but we just take one day at a time.

    Best wishes Doreen
     
  19. robslar

    robslar Registered User

    Dec 28, 2004
    9
    Virginia, USA
    Doreen

    So young! My husband was diagnoised in 2000 at the age of 52. He seemed to stay level there for a while, but in the past 4 months I can really see a decline. I as well am trying to get a sleeping aide for Larry. He is constantly walking around the house, never sits for more than 2 mins. tops. And at night he maybe gets 2 hours sleep. This can go on for days, then by the grace of God he'll have a good nights rest! But that comes with a price, after the good nights rest he's more aggitated during the day with everything including me! I have been trying to get his Dr's to give him something to help him sleep for awhile now, I'm at the point of begging them to prescribe something.

    He also has a condition called "Restless Leg Syndrome" and from the things I've read this can be verypainful. And I think one of the reasons he walks so much is because his legs hurt and this is relieving some of his pain.

    I hope what I have read is not true, but I know it's just wishfull thinking on my part, but according to the literature I've read when they are diagnoised early in life with "Early OnSet Alzhiemers" that it usually progresses at a faster rate.

    Take care, and my prayers are with you & you husband.
     
  20. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Hello Robslar
    Is that why my husband keeps getting up and shaking his legs, it can be very worrying, Fred is 57 now and he was diagnosed 1999, not on any of the usual stuff he has a bad heart and they affect it, he’s pretty stable though.
    Anne
     

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