1. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello

    My mum had a visit at the home today by her psychiatrist and the care home manager was upset as he has stopped the galantamine she has been on for 2 years.

    She started it in the early to mid stage and it has kept her going on a fairly even keel although her speech and understanding is more difficult now as is her swallowing and her short term memory is almost non-existent.

    My worry is if stopping it will cause a rapid decline for her. She is getting anxious at nights and has always been a wanderer, hence the secure rest home, but most of the time she seems relaxed and content.

    I have heard horror stories of the rapid decline after stopping the drug and wondered if anyone could help with any advice.

    We will be speaking to the psychiatrist tomorrow, but I be interested in the views of others who have experience first hand of this situation.

    Kathleen
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sorry Kathleen, have no first hand exoerience of coming off medication, but we have all read the info. Just wanted you to feel you are not alone, if we havn't reached there it is a cross road we will all come to.
    Thinking of you, take care of yourself, Connie
     
  3. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Kathleen,

    I have no firsthand experience to share, but you might want to look at page 2 of this NHS Medicine's Dispatch newletter (link below). It's from March 2004, but cites a study that showed galantamine to be effective for at least 36 months:

    http://www.ukmicentral.nhs.uk/therapeu/di_desp/MedDesp2004v126.pdf

    If you're speaking with the psychiatrist tomorrow, it might be helpful.

    Take care,

    Sandy
     
  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Thanks Connie and Sandy

    I just wanted to hold onto mum for a bit longer, but I know the end is inevitable at some point.

    I just want her to be as content as possible. She deserves no less than the best and we will fight all the way to see she gets it.

    I will let you know what today brings, at least we have a caring psychiatrist, but because this time is the first visit he has made to her without letting anyone know he was visiting in advance, alarm bells have started to ring.

    Like everyone, I can cope with most things this disease throws at us as long as I have a rough idea of what to expect, the unknown is very scary.

    Kathleen
    xx
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Update

    Having spoken to the psychiatrist today he says that as the galantamine is no longer effective in keeping the AD at bay, and she is in the late stage,he feels all her medication needs adjusting.
    She is coming off in stages over a month or so and he will see how she gets on but will not put her back on it again and the other drugs for slowing the progress are not going to be used either.
    The home manager is not too happy as she says, in her experience of similar cases, it is likely mum will go downhill fairly quickly, but we will just have to wait and see.
    I am confident that the home will get in touch with the psychiatrist very quickly if there are major problems, so just hope the downward path is as smooth as possible for mum.
    Kathleen
    xx
     
  6. Claire

    Claire Registered User

    Mar 31, 2004
    88
    Coventry
    Hi Kathleen

    My Mum was on Galantamine for a year, then she was taken off it by the Psychiatrist. I have to say there was a noticeable decline for a short while, then things evened out. Obviously, she is still declining but, 18 months after stopping the medication it isn't particularly rapid. Hope this helps.

    Take care,
    Claire
     
  7. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Thanks Claire

    That does give me some hope.

    I assumed the decline would keep going at a fast rate, hopefully mum will level off as well, although I will have to not get my hopes up too much.

    I am going to see her today and will let you all know how she progresses over the next few weeks.

    As I said on another thread it is the unpredictability of the progress and lack of any kind of timescale that makes AD especially hard to deal with.

    Kathleen
    xx
     

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