Who benefits from Alzheimer's drugs

Discussion in 'ARCHIVE FORUM: Support discussions' started by Grannie G, Jan 12, 2008.


Who benefited/benefits from Alzheimer Drugs?

  1. Prescribed Aricept

    19 vote(s)
  2. Prescribed Reminyl

    12 vote(s)
  3. Prescribed Exelon

    6 vote(s)
  4. Prescribed Ebixir

    10 vote(s)
  5. Prescribed none of the above

    1 vote(s)
  6. Did not take any of the above because of NICE guidelines

    0 vote(s)
  7. Pay/paid for any of the above privately

    2 vote(s)
  8. Was/Have been taken off any of the above

    12 vote(s)
  9. Stopped taking any of the above because of side effects

    5 vote(s)
  10. The medication appeared/appears to be beneficial [in family's view]

    22 vote(s)
Multiple votes are allowed.
  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #1 Grannie G, Jan 12, 2008
    Last edited: Jan 20, 2008
    I would like to collect some information about the use and value of Alzheimer Drugs.
    Please identify the Poll options that apply to you or the person you care for.
  2. connie

    connie Registered User

    Mar 7, 2004
    Good poll Sylvia.

    Hard to evaluate how the drug has helped Lionel. He was prescribed within days of diagnosis. No side effects. no noticable effect, but I wonder how much extra quality of time it did give him.

    I estimate about 2 years. However, six years down the line he is still on Excelon.
  3. Clive

    Clive Registered User

    Nov 7, 2004
    Mum was taken off Aricept when her mini mental test result was 12. There was no replacement drug given. In the following three months mum deteriorated very rapidly. This coincided with going into an EMI home so it is not possible to say if it was the loss of her home or the stopped drug that caused the change. Unfortunately it leaves the carer with a feeling of guilt and uncertainty. Did the Consultant stop prescribing Aricept because it was no longer doing mum good, or was it stopped automatically because, at the time, it was what NICE said had to be done in the NHS. Should we have tried to get a private prescription, or would that have been a waste of resources.

  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    That`s why I didn`t ask for an evaluation as I don`t believe the benefits could be assessed with accuracy.

    But there are so many posts related to the drugs, I`m beginning to wonder if Dhiren is the only one who couldn`t tolerate them.

    But aside from a personal interest, it might help us all to know more about them.
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I might be wrong Clive, but I thought those already being prescribed Alzheimers drugs wouldn`t be taken off them just because the guidelines had changed, but no new prescriptions would be issued to those at certain stages.

    There are so many ifs and buts and `should we have` with hindsight, but all I know is we all do our best with the information we have at the time.

    Take care xx
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    #6 Skye, Jan 12, 2008
    Last edited: Jan 20, 2008
    John was put Reminyl from day one, and is still on it(though not for much longer, I think). It had a huge positive effect.

    He was also prescribed Ebixa, which had no effect that I could see. He's now off that.

    I'm on the local panel drawing up Integrated Care Pathways, according to the new national guidelines. One of the 'Standards' we have to consider is the prescribing of anticholinesterase medication. We have to follow NICE guidelines, but there will be 'variations'! This means that they can be prescribed outside the guidelines, but the consultant will have to justify the prescription.

    The pharmacist on our panel is going get facts and figures for prescriptions for the whole of Scotland, I should be able to get them for you at out next meeting, at the end of next month.
  7. connie

    connie Registered User

    Mar 7, 2004
    Sylvia, this will not affect your poll at all. However,

    3 young men. 62 - 54 -58. All suffering from dementia related illness.(2004)

    Lionel on Excelon, B*** on Excelon, then adjusted to Aricept as he could not tolerate the higher dosage of Excelon.
    R**** tried on all three, settled on Reminyl in the end.

    2008 - all three men are now in 'care homes' in various stages of the illness. Who really has this helped: them to be more 'aware' or their carers to cope.

    We often sit and talk about this. As carers we are very close and supportive. We have no conclusions.
  8. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Connie, when John was diagnosed in 2000, we had been married for four years. If his rapid decline had continued, I would really have been felt robbed. As it was, Reminyl gave us seven years of reasonable quality of life, some good holidays, and some very happy memories, including his son's wedding, and the birth of two grandsons.

    NICE obviously does not think this to be a valid use of NHS resources. To me it is worth much, much more than the cost in LSD.
  9. connie

    connie Registered User

    Mar 7, 2004
    Hazel, I know where you are at.

    Every extra day with my Lionel has been a blessing. No matter what NICE decide, I know the true worth of the dementia drugs.

    I cannot say " as I sit beside hime today" because I took a day off today to rechHARGE MY BATTERIES" but it does really matter.

    We, at the caring face, are the ones who really should decide.

    Without Lionel, I don't exist. I have been here before.
    I really do know what I am talking about.

    Cost - it really doe not come in to it.
  10. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Althogh Peter is in the E.M.I. Unit and in the last stage, the Consultant still has Peter on Aricept.
  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    difficult to answer the poll.
    Peg had Aricept for 13 years.
    The first few years we had to pay for them ,they were not available on the NHS.
    Although her mini test was low she never came of the Aricept,but went downhill in a matter of a few weeksat the end.
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I know it`s difficult to answer precisely Norman, because everyone is so different.

    But it`s interesting to know that Peg`s rapid deterioration in her last few weeks wasn`t because Aricept had been withdrawn.

    Thank you.

    Love xx
  13. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    The N.I.C.E people at N.I.C.E

    Did you know that if you have Parkinsons with dementia, Aricept is available.
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    #14 Brucie, Jan 20, 2008
    Last edited: Jan 20, 2008
    Who benefits from Alzheimer's druggs

    At her request, I have reposted Sylvia's poll in a way that permits members to select multiple choices.

    Unfortunately, while I have been able to move the replies into the new thread, the responses made to the poll have been lost - so can members who posted before please do so again, either with a single choice as before, or using multiple choices, if that is relevenat for your purposes.

    I have moved the replies to the original thread except those that spoke of there being no multiple choice. However there may be some references in the replies before this one that may benefit from editing by the original posters.

    Apologies to Sylvia and everyone - it has taken a while to get this back on the forum.
  15. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    My husband was on Aricept from August 2000 for exactly 5 years, and I am absolutely convinced that he (we both!!) benefitted hugely. For the first 2 - 3 years we had to pay for it.

    Within a couple of weeks of being taken off Aricept (apparently because it may have caused a slow pulse ....... my husband has always had low-ish blood pressure and slow pulse!) he lost all ability to look after himself, became doubly incontinent - a complete nightmare!

    Two months later he was put on Ebixa, which helped his co-ordination and helped me cope again, and well over two years on we are counting our blessings as he is still at home, reasonably calm and contented.
  16. TinaT

    TinaT Registered User

    Sep 27, 2006
    My husband has been on Exelon for 4 years. He was first prescribed it in Spain where the state paid half the costs and I paid the other half. When we came to England it was continued by the local GP and was free. I would love to say that the drug has helped but in all honesty, it neither slowed down the progression of the illness or seems to have helped in any way. xxTinaT
  17. twink

    twink Registered User

    Oct 28, 2005
    Cambridgeshire UK
    alzheimer drugs

    My husband was on Exelon too for a few months but it made no difference to his dementia at all so it was stopped. When he had a memory test and scored 6 the psychiatrist took him off it. He is 57 so as we know that the illness is more aggressive in younger people, maybe that's why it didn't work for him.

  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #18 Margarita, Jan 20, 2008
    Last edited: Jan 20, 2008
    My mother was put on Ebixa in Gibraltar in 03 when she retired out they in 02 , where the state paid for it, because my father , mother paid they NI Tax out they , before they emigrated to London in 1959 .

    They never gave her other drugs because she had gone into the late stages , she must of been showing sigh after my father died in 02 , but doctor in UK put it all down to grief .

    The move to Gibraltar really push her into late stages

    She use to wonder the streets in her night dress at night time .

    Get lost during the day .

    Thought franco was still the Prime Minister of spain , so would not go across broader into spain

    she was double incontinent , did not know where the toilet was, mistake bath or any room room for toilet .

    Thought I was her sister .

    Cling to me like a child .

    The list is endless .

    when they gave mum Exbiza I was clueless to what it was , or what AZ was .

    It gave her back the ability to know day from night .

    where the toilet was, go toilet on her own .

    who was Prime Minister of Spain and England what year it was .

    New who I was .

    When I brought her back to UK in 05 , she Got Exbixa it on the State because she and my father had paid they Taxes NI in England since 1959 .

    It slowly progressing now in that she becoming incontinent urine only this time needs pads , but still go to the toilet herself during the day and night just needs my help pulling her nicker up . her walking is much slower and is now to scared to walk outside alone even with Zimmer frame , but with help gets on bus to day center, still interacts with everyone enjoy going.

    I have found the drug amazing really , she been really lucky that it has work so well for her .
  19. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    Clive, the decision by NICE had no effect on anyone who was already being prescribed these drugs.

    It was only for newly disanosed patients that the new guidelines came into effect.

    They are also only guidelines. A doctor can still prescribe them if they feel there is a clinical need, but must be prepared to justify themselves to their Primary Care Trust.
  20. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    Officially, Aricept is only licensed for use with Alzheimer's Disease. It is not licensed for use with other types of dementia.

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