1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. LILYD

    LILYD Registered User

    Oct 26, 2007
    6
    hi
    this is the first time i have posted here
    i usually just read the threads and use the advice given, however i could not find anything on the drug memantine

    my father was diagnosed with alzhemiers about 5yrs ago and since then he has been on aricept, however since the past year things have started to progress and he is showing signs of being in the moderate to severe stage of alzhemiers!

    we spoke to his consultant about having memantine but he advised against it as he said he had tried in on 3/4 patients with no significant effect. we would still like to try it and are in the process of getting a private prescription from our GP

    what i would like to no has anyone tried this drug and does it have any significant effect

    as anyone with a family member with alzhemiers you can understand that we are desperate to try anything nomatter what the cost is

    can someone please help me on this issue

    lily :)
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Dear Lily, welcome to TP.

    I`m sorry I cannot help you with regards to the positive or negative effects of this drug, others may post who have had experience of it.

    But what I can say is the effects the drug has on others might not be the same effect it has on your father.
    Drugs have such different effects on different people, depending on so many other aspects of their health, other medication they are taking, and even their basic metabolism.

    If you self prescribe, against the advice of the doctor, it might be difficult for you to get further support, especially if there are adverse effects.

    I can understand your desperation to try anything to help your father regardless of cost, but I`m sure you would not wish to disregard any possible harm he may suffer, from self prescribing.

    Take care xx
     
  3. LILYD

    LILYD Registered User

    Oct 26, 2007
    6
    hi

    we are not going against the consultants advice, its just that he thinks it does not have significant benefits and also i think they are against prescribing it due to the recent govnt bann on certain alzheimiers drugs

    the consultant said he tried it on 3/4 patients which i think is not enough to say whether or not it works

    we will find out about all the side effects before we get the medecine
    sometimes you are so desperate that you want to try anything that is available dont you?
    thanks anyway

    hopefully someone will have some experience with this drug and help me decide what to do:)
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Lily

    Welcome to TP. My husband was on Ebixa for about 18 months, and it didn't seem to have any effect on him at all. He is now off it, with no noticeable change in his condition.

    However, that's not to say it wouldn't work for your father. Some people have seen considerable improvement.

    The issue here is that NICE have decided that it is not cost-effective, and therefore should not be prescribed on the NHS. However, if your GP is prepared to give you a private prescription, I don't think that could be considered as self-prescribing, though it could be that you would be expected to pay for any treatment needed for possible side-effects of the drug. It's unusual for a GP to be prepared to prescribe privately for an NHS patient, usually you have to be one or other.

    I'd find out more before you go ahead with this, though I can understand your desire to try anything.

    Good luck,
     
  5. LILYD

    LILYD Registered User

    Oct 26, 2007
    6
    hi

    thanks for showing me where the search button is ive been looking for it for days
    i thought it was strange that there was nothing on ebixa on this forum but now i have found loads
    so thankyou so much

    it all looks good the only side effect iam worried about is the diahorrea as my dad already has problems with that and my sister and mum have to clean him up so i onlt hope it doesnt get worse
     
  6. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    NICE & Memantine: Clarification

    Just to clarify that the NICE position on memantine is, "Memantine is not recommended as a treatment option for patients with moderately severe to severe Alzheimer’s disease except as part of well designed clinical studies.". In other words, they do not consider that there is enough data on efficacy.

    The interest in memantine is that it works on a different brain chemical than drugs like Aricept. There is interest in seeing if the two drugs work in combination.

    On Aricept, NICE made the point (my words) that it has very positive effects on a minority of patients and this distorts the overall efficacy reading. In other words, remove this minority from the panel of patients and it is not possible to see a significant effect. They called for data or research to understand this phenomenon since it would enable doctors to target the treatment to those who would really benefit. There is thinking that the same may be seen with memantine.
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #7 Margarita, Oct 26, 2007
    Last edited: Oct 26, 2007
    my mother has had a very positive effect with Memantine, 5 years on it , still living with me .

    Mum was in late stages when she took it also

    Diahorrea can happen with or without medication , mind you mum was excreting all over the place , slipping falling into it before Memantine,

    Then with Memantine,
    she remember where the toilet was , still now can clean herself when in toilet . Just now , then she having Miss haps , medication now slowing down , but never as bad as B4 Memantine..... it was never a cure anyway .

    USA have a AZ forum , seeing that Memantine, approve out they you may get more response if you ask that
    question in they forum
    [ make sure u came back 2 TP :) ]

    Great Briton very close shop with this medication for AZ and the positive effect it can have , because they don't want to spend money on medication in early late stages .

    We got it in Gibraltar where its approve also in Spain its approve
     
  8. LILYD

    LILYD Registered User

    Oct 26, 2007
    6
    my gp has said that he will prescribe but needs the consultant to say that it is ok but if the consultant says that he doesnt recommend it can the GP still prescribe it?
    he should be able to as he is my dads GP and im sure hes aware of the medication and what it is for
    i just hope one of them can pescribe it as without it i feel as though there is nothing else we can try and no hope!!!!!!
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Petrus, just for interest, John was taking memantine in combination with galantamine.

    Whereas galantamine had a huge positive effect, adding memantine made no difference whatever. he's still on galantamine, seven years later, though now deteriorating very fast. I fear it won't be long before they begin to talk about withdrawing that too.

    I agree, further studies are needed into why some people benefit while others don't.
     
  10. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Lily,

    Welcome to TP. As you have now searched for 'ebixa' you may have read of our experiences

    My Dad was prescribed Ebixa in December 2006 when he was first diagnosed. He was considered unsuitable for the Aricept type drugs due to an irregular heart beat.

    He experienced diarrhoea for the first week, but then has had no problems (with diarrhoea) since.

    We haven't seen any dramatic improvement in him since then, but then no dramatic deterioration either. When we went to see a different consultant a couple of weeks ago he asked whether we had seen an improvement. When we said 'no' he said he was not surprised as he had yet to see any great success with ebixa.

    Having said that we were reluctant for my Dad to come off ebixa as if he then deteriorated it might be difficult to go back on it in light of the NICE guidelines.

    These are just our personal experiences.
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    Hi Lily

    While I have absolutely no experience with this drug I'm with you in thinking that 3 or 4 patients does not an effective clinical trial make. Why 3 OR 4 anyway - can't the consultant remember??:eek:
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Dear Lily.

    Before my husband was diagnosed, he was prescribed anti-depressants by our GP. Since diagnosis, the monitoring of the dosage of anti depressants is in the hands of the consultant only. The GP provides the prescriptions on the instruction of the consultant.

    Recently I wanted an increase in the dose my husband was taking. We had to see the consultant to discuss it, and he instructed the GP to prescribe it.

    That seems to be the way they work. Any treatment for dementia in out of the GP`s hands.
     
  13. carolr

    carolr Registered User

    Jul 12, 2007
    33
    bradford
    Hi Lily

    My Dad was diagnosed 11 years ago and was taking Aricept up to June this year when he went into assessment unit. The consultant refused to continue with Aricept saying that Dad did not pass the NICE tests. I argued and argued to get the drug reinstated and after 6 weeks it was, however Dad was then very ill with tummy upsets had forgotten us and the disease seemed to have leaped to a much further stage. The consultant was continually changing medication and Dad got no better. The consultant then stopped the Aricept again and put Dad on Memantine he has now stabalised is contented is eating and he knows us again, the consultant explained that the drug whilst passed for use is still very much on trail. As we understand it it has a levelling affect on moods Dad is certainly more stable.

    I set my stall out to fight the consultant I had it fixed in my head that they just wanted Dad quiet and did not care if he was happy or had any quality of life, I was very wrong very wrong as it turned out. They must see it everyday the disease makes families super paronoid our loved ones are helpless so we all become lionesses and lions and rush in to protect them.

    I made a mistake and am so gratefull that our consultants ignored me and did what he thought was right.

    Good luck Lilly, keep caring but remember that others care 2.
     
  14. 1234

    1234 Registered User

    Sep 21, 2005
    43
    bradford
    lily d

    My husband 57 has been on aricept for 3 years , not alot of change but when taken along side ebixa we found he had much better thought process, not great do not wont to mislead you, but could understand some of his speech which we hadnt previous, and it has allowed us to have him home again, i think it is the combination ofaricept and ebixa that has worked, god bless our cpn who pushedfor Trev to be allowed to try, by the way we get both on nhs prescription, so push for your right to try, must rush trev needs some assistance, but just glad to have him here . will give you more info when trev goes to bed.
    pam
     
  15. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,985
    Toronto, Canada
    It's worth a shot

    My mother was put on Ebixa/memantine a couple of years and we found it noticeably helped her. A little in abilities and a lot in behaviour. She is still on it and we do pay for it privately here but it's worth it to us.

    You can tell the consultant you would like to try it for 3 - 4 months. If there is no benefit or the side effects are too much, you can always discontinue it. If you don't try, you'll never know.

    By the way, my mother had no apparent side effects.
     
  16. blooddiamond

    blooddiamond Registered User

    Hi,
    About two years ago I heard about Ebixa, My Dad had been told that there was nothing more that could be given to Mum and that Ebixa was far too expensive, was not available on the National Health and had shown no noticeable difference in the patient.

    To me, this all turned out to be a pack of lies borne out of the need for cost control.
    I had a long, protracted fight with various people, I contacted the manufacturers in Copenhagen and they told me they were not allowed to give any scientific test results on the drug, even though it would have helped their case.

    One person there, did talk to me totally off the record, she told me exactly how much the NHS actually had to pay for the drug. My Dad said he had been told that the tablet was £1000 plus, it turned out that it was less than £3 per tablet.

    It also turned out that (at that time) it WAS available on the NHS, it just depended on the area you lived in.
    N.I.C.E. have since decided that it is of little value and is not cost effective.

    Well....... I threatened to go to the European Court of Human Rights on my Mothers behalf as I felt her rights were being infringed. I wrote to the local MP, to Tony Blair, John Prescot and many others, I phoned the consultant and Mums GP and even spoke to a member of N.I.C.E. Eventually they agreed that she could be prescribed Ebixa, but that we would have to pay for it. It cost about £80-90 per month approx.
    The difference??
    Before Mum was on the tablet she was given the phone to speak to my sister in Canada, all she would say was "Hello.....here's your Dad" that was all she could manage.
    After a month on Ebixa (the drug company recommend at least a month before any noticeable results) Mum spoke to my sister for over 45 mins!!! (absolutely true!)

    Now,please bear in mind, Ebixa is no miracle cure and it clearly does not work for everyone and even if it does work, it is a limited amount of time, (Mum had an extra year.) But it was an extra year of Mum that we would not have had if we had not tried.
    Some people lie to you, some Governments lie to you and sadly even some consultants do and normally it is because of cost and financial restrictions, after all, a practice must look at costs and long term benefits, they sadly will look at an elderly patient in need of expensive drugs as less important as a young patient who needs expensive drugs.

    I offer no advice, just my experience and thoughts,

    My feeling was **** the cost! This is a human being we are talking about and people should not be swayed by arguments from people who know better that I found to hold no substance to them.
     
  17. roman

    roman Registered User

    Aug 8, 2007
    16
    Liverpool
    Ebixa

    My mum has vascular dementia.I read on net that some research had shown that it could be effective with patients who had vascular dementia (obviously your GP knows different?) as well as Alzheimers.I could not get it from the GP as it was not licensed for vascular dementia patients but he suggested the name of a consultant who has prescribed it for some years.I do not remember any dramatic improvement but as far as I know Ebixa slows down the progress of the disease.It is also supposed to lift the mood.When I asked about whether it was still working after 2 years the consultant said if it was his mum he would not take her off it as she may go back to what she would have been like without it and we may not get her back .It is very expensive costing about £25 week and more now that she will only take it in liquid form.We were advised to shop around but kept with same chemist as they did blister packs and delivered.
     
  18. LILYD

    LILYD Registered User

    Oct 26, 2007
    6
    hi

    thankyou all for all your advice
    just to let you no that my dads consultant said he would recommend the ebixa but unfortunately he cannot prescribe it on the NHS so we will have to get a private prescription which is what we knew he would say anyway
    im just so happy that he said yes and at least we can try that and maybe have a few more months with our dad at this stage!!!:)
     
  19. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Hi LilyD

    Good news to get Ebixa, sorry it is not on the NHS, my m in law has Aricept and Ebixa jointly, and they are both funded by the NHS. When she was first prescribed Aricept it was by private prescription, we shopped around and found that Tesco pharmacy at that time did it the cheapest. It's worth shopping around for prices, they can vary a lot.

    Best wishes.

    Carol
     

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