1. mandyp

    mandyp Registered User

    Oct 20, 2004

    I'm so pleased to have found this forum!

    Sadly, my Mum was diagnosed with Alzheimers in April, she's only 55. This has been devastating for all of us (myself, mum and dad)

    There's only myself and Dad to deal with it (apart from friends) and Dad doesn't want to worry me as he reckons I have my own family to worry about! He doesn't seem to understand that him hiding things makes me worry more.

    My question is this, Mum has been getting Rivastigmine for a while and is now on the maximum dosage that she's allowed. Sadly, we don't think that it's made a difference (if any). The nurse has told Dad that this is all she can get. I wondered if anyone is aware of other drugs that they could try instead of this one which may help? As far as I can see there are a few drugs that are available in the early stages of alzheimers, is it not possible for them to try other drugs or is it standard practise to only try one?

    I'm quite happy to pay for drugs that could help, anything, to attempt to keep this dreadful disease at bay, even for a little while.

    It's so awful to see Mum change the way that she has, she's lost confidence, got quieter and just isn't the way she used to be. I know that I have to accept that this will only get worse, but it's so hard. I'm 34 and I feel cheated, my Mum should be around for many years to come. I wanted her to see her granddaughter grow up. I feel I'm in some way mourning my Mum and she's still here.

    Any advice would be most appreciated.

    Thank you!
  2. mandyp

    mandyp Registered User

    Oct 20, 2004
    Thanks for the link, I read it prior to posting but still wasn't sure if it was possible to try the other drugs.

    Will tell my Dad to ask the doctor next time he's there with Mum.

    Thanks again.
  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    prescibing seems to vary from district to district.
    I understand that in some areas the GP will precribe one of the tablets available for AD sufferers.I n our case Aricept.
    Our consultant prescribed them and they are delivered directly to us from the hospital pharmacy by the CPN.
    This is a good arrangment as at least we get to talk to the CPN every 3 months.
    best wishes
  4. Becca

    Becca Registered User

    Jan 6, 2004
    West Yorkshire
    Alternative Drugs and other things

    My Dad was diagnosed with Alzheimers in late 2001 at the age of 53 so firstly I know exctly what you mean about feeling cheated. Three years on and Dad is in full time care and often hasn't a clue who I am when I visit him. I am 25 and ever since I was a child my Dad has been my idol and I never imagined I would have to see him gradually slip away. It is a terribly cruel illness both for the person suffering and also for the family and friends around them. The worst thing for me was actually about 18 months ago when Dad was still quite aware of what was happening to him but was losing his memory at a rapid pace and was obviously very scared about what the future held for him.

    Anyway, Dad was prescribed Aricept when he was first diagnosed and was actually 'lucky' enough to be given the chance to try Exbia too. I say 'lucky' cause he actually had a very bad reaction to it and had to come off it straight away but I understand that the drug is very expensive and few people even get the opportunity to try it.

    Good luck for the future to you and your family and if there is anything that I can do to help you or explain to you from the benefit of my own experiences please do get in touch either through the forum or a personal message.
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Mandy

    yep, there are lots of us out here!

    It was my wife who began to show her first symptoms of Alzheimer's/vascular at the age of 51, so I'm another one who feels cheated, not only of someone I love, but also of our joint 'future' together.

    Jan tried all three of the major dementia medications in turn. None of them had any effect whatsoever, but I am glad I can say we at least tried them. I had to use some strong tactics to get the second two prescribed, after the Aricept proved of no use.

    Very best wishes to you
  6. mandyp

    mandyp Registered User

    Oct 20, 2004
    Thank you for all your replies, I really had no idea that there would be a 'problem' getting drugs. I was aware that waiting lists were affected by postcodes but didn't know that terminally ill people have to rely on their families fighting for them to get the drugs/treatment that they have every right to receive.

    Presumably my first contact should be with the doctor. I'm afraid my Dad isn't one of life's pushiest people, nor am I. He and I tend to disagree a lot (this hasn't been a lifelong thing, only since Mum has been diagnosed). Unfortunately, he sees me as interfering and I see him as not doing enough! However, Mum's welfare is the most important thing and all either of us should be worrying about.

    So sad that nobody seems to have managed to have had much success with these drugs, but presumably they work for some people and I have to try.

    Thanks again!

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