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  1. clare7482

    clare7482 Registered User

    Oct 7, 2010
    Hi, my husband has just turned 41 and has now been told that he has a very rare form of Alzheimers, only 1 in 80 million people get it, and it has no name. I just wanted to know if anyone had experience of Aricept and if it would be worth fighting for?
    Thanks, Clare
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Hi Clare

    You say "fight" for the aricept? This implies that your husband has been told he is not eligible to receive it. Is that correct?
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I'm so sorry to hear this news - so young too. Jennifer is right, you shouldn't have to fight for it if it is useful for your husband's type of dementia. Lots of different reactions to Aricept I think but my husband's experience was very positive. Obviously it didn't reverse the dementia but I am pretty sure it slowed it down - in his case for a very long time. He has now been moved (after 9 years on Aricept) to Exelon. Good luck. xx
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Clare:

    I am so sorry to hear that your husband has been diagnosed at such an early age with a rare form of dementia.

    It is worth you asking the Consultant dealing with your husband if Aricept or Exelon are suitable for him. If not I am sure they will give you their reasons.

    As the others have said you should not need to fight as they are readily prescribed now, but only if suitable as both are potent drugs.

    With best wishes
  5. seaurchin

    seaurchin Registered User

    Oct 24, 2009
    #5 seaurchin, Apr 8, 2011
    Last edited: Apr 8, 2011
    Hello Clare,

    I am sorry to learn of your husband's illness. My husband has young onset Alzheimer's and he was prescribed Exelon shortly after his diagnosis. It was given readily and we didn't have to fight for this medication. The fight that I did have was for the diagnosis in the first place and after that I did expect to fight for the medication too but thankfully it was not the case. I think it helps a little but is difficult to assess as my husband is so changeable. I hope you have the same help in receiving medication.

    I wish you both well.

    Kind regards

  6. nicoise

    nicoise Registered User

    Jun 29, 2010
    Hello again Clare7482,

    I'm glad that you finally have a diagnosis, but so sorry that it is seemingly such a rare type of dementia.

    If nothing else, hopefully that will give you the medical attention you need to help your husband and yourself, which I realise is a pathetically small crumb of comfort when it comes to the bigger story and how to deal with it.

    When we communicated before it was when Parkinson's was amongst the possible thoughts, and I told you of how Exelon had helped my mum feel less foggy and sharper - Exelon being the dementia drug usually used in Lewy Body types of dementia.

    I don't know whether with your husband's type of dementia either Aricept or Exelon would be of help, but I would hope that you wouldn't have to fight for a medication if suitable. Whilst your husband's diagnosis is unusual, there must be some expert somewhere with a view of medication. And whilst the benefits aren't always quantifiable, it is usually pretty quickly obvious if a medication isn't tolerated by a patient and can be stopped if that is the case.

    If you do a search of the forum you'll find many posts with regard to Aricept or the other forms of dementia drugs which may give you more information.

    Please do let us know how you are getting on - we're here to back you up if you need to do battle with "the powers that be"!
  7. clare7482

    clare7482 Registered User

    Oct 7, 2010
    #7 clare7482, Apr 9, 2011
    Last edited: Apr 10, 2011
    Thanks for your responses

    I have been told that in order for Aaron to get Aricept our consultant would have to put it to the trust board and that he couldn't be prescribed it without it being authorised ..

    Aaron was firstly diagnosed with Parkingsons with lewy body, then I was told earlier this year that Aaron had CJD. Now the consultant has said that CJD is less likely as his SPECT scan showed to be more typically Alzheimers related, although it is incredibly aggressive, and it is either a rare form of Alzheimers (as previously stated,) Parkinsons disease dementia conplex or both parkinsons and alzheimers, although I haven't heard of someone having both before. Either way, his prognosis is not good, our GP seems to think that Aaron only has 3 months left as he has deteriorated so fast.

    When the consultant told me Aaron most probably had CJD he also asked permission to take his brain when he dies for research. The consultant seems to be more interested in Aaon when he dies than while he's alive. As yet I have not given consent and do wonder if this may be some of the problem with the consultant

    In one year Aaron has gone from being able to do almost anything to now not being able to walk unaided (he now has a wheelchair), chew food or swallow easily and he's urinary incontinent. He also has terrible hallucinations and his speech is slurred a lot of the time. He has marked cognitive impairment

    All in all, no-one really seems to know what is wrong with him, I'm just clutching at anything that could make a difference to the dementia side and perhaps slow it all down
  8. carrie99

    carrie99 Registered User

    Apr 26, 2009

    Yes Yes Yes it is worth fighting for!!!
    Since taking Aricept I am almost myself again. I am allowed to drive, I sing in an unaccompanied choir, can read a book cover to cover and retain what I have read.
    Go for it - the initial dicky tummies as you get used to it is a very small price to pay.

  9. tish

    tish Registered User

    Feb 8, 2011
    My niece has early onset alzheimers aged 36 and yes it is rare. It feels so lonely dealing with the condition and at times all i can do is cry. She is taking Aricept, it did seem to work at first but right now nothing seems to be working. Not sure as i will be of any help but sometimes its nice to bend someones ear, so there is my offer. Contact me anytime
  10. carrie99

    carrie99 Registered User

    Apr 26, 2009

    I was diagnosed at age 52 and the Aricept is definitely worth it!
    It takes a few weeks to get used to it (the odd stomach upset
    etc,) but the difference is amazing.I feel much more upbeat now.
    I am sure it has made all the difference.

    I am still alowed to drive (one driving assessment each year)
    and life is almost normal - of course with the immense help with my partner of some years.

  11. Litlle Lesley

    Litlle Lesley Registered User

    May 8, 2011

    Terry Prachett says "this drug is like putting sandbags to keep out the flood" and I think this says it all.
    Well worth fighting for I would say.
    My husband was 58 when he was diagnosed, two years ago. He is gradually getting worse, but I am sure it is stemming the tide.
    Hold on in there you are not alone. Lxx
  12. TedHutchinson

    TedHutchinson Account Closed

    May 20, 2009
    Louth Lincs
    If the statistic you quote is correct then your husband is likely to be the only case currently in the UK.

    ARICEPT is an anticholinergic medicine but it is not for everyone it will only work if people have a problem with Choline Using Acetylcholinesterase inhibitors if there is no reason to may be counterproductive.

    As we don't know what this form of Alzheimer's is and as it has not yet been named it's impossible to search for it seems that the only option is to respect the knowledge of those who are actually aware of the facts.
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