1. Jennie Leech

    Jennie Leech Registered User

    Feb 3, 2004
    9
    Suffolk
    I posted a message asking about your experiences with Ibixa. I had no replies. Do you want to hear about my experiences of my husband being treated with Ibixa?
     
  2. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Yes, please, Jennie.
    I have no experience of Ibixa, and have to admit that I found it very hard to assess the benefits of Aricept, which my husband has now been on for over 3,5 years. When I mentioned this after the first 3 months, the consultant said it was very slow to 'work', but when I enquired what would happen if my husband stopped taking it, his reply was that "the downward development would be sudden, marked and irreversible". A frightening thought, and I can only take his word for it.
    Kind regards, Carmen
     
  3. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    I would also like to hear from anyone who has any experience of the effects of Ebixa.

    Is this perhaps on the wrong forum? - maybe it should be on the general discussion forum as perhaps not everybody looks at this one which I assume is for technical advice about how to use the site.

    Hoping to hear from someone, or is it the case that Health Authorities haven't agreed to pay for Ebixa, so not many people are getting it yet?

    Best wishes, Ruthie
     
  4. Jennie Leech

    Jennie Leech Registered User

    Feb 3, 2004
    9
    Suffolk
    Can't get the hang of this Discussion Board!
    Am I supposed to answer myself?

    Husband has had Alzheimer's for about seven years so judge he is in `final phase`.
    He was denied Aricept by consultant cos he was a `reluctant attender` at the clinic and since drug had to be regularly monitored it was not prescribed.

    First heard of Aricept about a year ago.
    Moved Heaven and Earth to get prescription. Eventually could only get it by paying. Felt I could not deny him any chance there might be.
    Best thing=no side effects. Dose has to be built up gradually. Been on it for about 10 months now. Difficult to see benefits cos don't know what would have happened without it! Only have other sufferes to judge him against and think he has not deteriorated as rapidly as they have. Know this is dodgy comparison cos no two cases the same.
    Has kept him wanting to be independent. Sadly, does not have the skills to match the independence for eg, wants to do own laces but knots them up. Can still tie a Double Windsor better than me though!
    I like to see him trying, even if he doesn't get it quite right. Makes me feel proud of him.
    Have not been told what will happen when he comes off Ebixa. Couldn't bear the thought of a rapid decline and will pay as long as possible.
    Jennie
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,709
    Female
    Dundee
    Sorry to be thick - is Ebixia the same as Aricept?

    Izzy
     
  6. wendy43uk

    wendy43uk Registered User

    Dec 22, 2005
    64
    sheffield
    ebixa

    Hi my hubby john has been taken ebixa for 9 weeks arecept seemed to have stopped working ebixa is for middle to severe alz and works for some not others it seems to work john seems brighter but still not as good has he was 6 months ago i have been told it can slow things down just like arecept john is taking the top dose twice a day also he still takes 10mg of aserept wich i cant see the point off as it had stopped working thire is 7 stages of a;lz dose anybody no wich order they are as people ask me what stage i cant answer them john is 60 and started with alz 3 years ago
     
  7. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    39
    Staffordshire
    Ebixa

    Hi Jennie,
    My mom is going to start taking Ebixa in about 2 weeks time. The doctors don't like prescribing it because of the cost ( NICE ) being behind this decision. My moms consultant only prescribes it to a few but because my mom is now in the Moderate stage and I asked him about it , he said yes ( not private either ). She will be taking Reminyl too as she is already on this. Mom has to wait a few weeks because she has just had her night medication changed because she wasn't sleeping and was up at 3 am, very confused and her doctor want this medication to get into her system before introducing Ebixa.
    I will let you know how she is with it.
    Regards
    Suptowngirl
     
  8. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    Not quite sure how to write this because it is so difficult to know if events are because of a drug or would have happened anyway...

    Monique was prescribed Ebixa some months ago... I started an enthusiastic thread on this forum because the effects were so immediate and apparent. She became much more aware, clear headed, brighter. Not like switching on a light but within days of commencing the slow build up to the full dose I began to perceive a difference.

    Of course I was thrilled and delighted.

    But there was a side effect - because of the greater 'awareness' (possibly that is the best word for describing the effect it has on Monique) she became more aware of her condition - that things were badly wrong inside her head. (she has never admitted there is a problem - until last night) Because of this dent in her ability to deny there was a problem she became even more depressed and withdrawn. Before Ebixa she used to 'sleep for England' never up before noon.. and sound asleep. Now she wakes - during the morning and lays there - not wanting to get up - there is no reason....

    Of course all this is related to Monique's personality but the impression I have is that it can for some patients clear away the fog... for them to suddenly be aware they are teetering on the edge of a chasm.

    Monique is still taking it - I had many doubts as to if it was actually improving the quality of her life - And do I have a right to judge???

    Not sure this is a helpful post but it is my feeling that the benefits vary from person to person possibly depending on their own awareness of what is going on in their lives

    regards

    Michael
     
  9. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,975
    Toronto, Canada
    Michael,

    You are right on the money - every drug affects every patient differently (positively and negatively) and I would think with the nature of the disease, the AD drugs would have even more obvious effects.

    And like Monique, my mother is certainly much more "aware". She is not really aware of her condition because she is considered to be a stage 6 but she certainly has been brought out of herself. Previously, she had spent months mostly staying in her room, in bed, not bathing & swearing at anyone who "bothered" her. So I feel it was worthwhile in her case.

    It certainly is more difficult for you, as Monique has become more aware of her own limitations. Several years ago my mother kept thinking she was losing her mind. I kept saying "No, Mum, you're just losing your memory". That was the closest I could get to telling her she had AD. So you are in a difficult situation - what to do? Perhaps you should just wait & see for a while. I would really be hesitant about discontinuing any AD drugs. I too have heard all the stories about the incredibly swift declines.

    Tell us how you fare.

    Jennie,

    My mother was on Aricept for 4 years. I did get Ebixa prescribed because I felt it was worth a shot, even though it was only conditionally approved in Canada at that point.

    As I've said in previous posts, it certainly helped her moods, less anxiety, less agitation. The doctor switched to Reminyl from Aricept, there is a theory that it helps so that's why they like to keep a patient on either Reminyl or Aricept while using the Ebixa.

    Joanne
     
  10. wendy43uk

    wendy43uk Registered User

    Dec 22, 2005
    64
    sheffield
    ebixa

    thankuou for all the postive remarks about this drug lets hope its going to carry on working john is wakeing a lot earley by 7 am in stead of 12 he is also getting thurgh the day with out a sleep in the afternooon seems to be with it and involved in things that going on around him he was told he had alz 2 years ago i have never hid that from him he was a care worker at a home for 4 years before he was ill so he was awere he could have alz so i told him it was hard at first but he seems to just get on with it
     

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