Information on stopping drugs needed please

Discussion in 'ARCHIVE FORUM: Support discussions' started by Kathleen, Nov 3, 2005.

  1. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello
    I wondered if any of you might know where I can find information on the effects of stopping galantamine, or any other "anti-alzheimers drug"

    As I have posted before, Mum is now completely off the galantamine and 14 days after the last dose is spiralling down pretty fast. We guess she is probably in the final stage of the illness now, but I keep hoping not. I can't bear even the thought of losing her, she is such a lovely Mum, even though she doesn't know me most of the time.

    Her mobility, speech and language skills have taken a real battering, she can no longer wash, dress or feed herself without a lot of supervision, and she seems so much "further away" than she was even a month ago. Her eyes seem to look through you rather than at you, if you know what I mean, and she is more stiff in the face and upper body, she also feels her knees are "giving way" and can't always "feel her feet", whatever that means.

    Both family and the staff at the care home are worried and very angry, but when we asked the psychiatrist if this downward turn was due the drug being stopped -on the grounds that after 3 years it was "time for a change", - he would not give a straight yes or no, just said that it was "the disease progressing". Not much help really.

    It seems drug companies and doctors are very helpful at warning of the side-effects of being on this type of medication, but there seems to be no info on the effects of stopping it.

    Kathleen
    xx
     
  2. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Kathleen,

    Here are some links that might be helpful. They might not all be relevant to your mum's particular case, but thet do help put a few more pieces of the jigsaw puzzle that is medications policy into place.

    http://www.docguide.com/news/content.nsf/news/8525697700573E1885256BFE0066ECBC

    The above article contains reports of two studies on withdrawing drugs from people with dementia.

    http://www3.interscience.wiley.com/cgi-bin/abstract/106563280/ABSTRACT

    The above is an abstract from the International Journal of Geriatric Psychiatry
    Volume 18, Issue 11 , Pages 988 - 993. It reports on the second study mentioned at the Alzheimer's conference. It was based on 19 people with dementia with Lewy bodies (DLB) taking and then stopping donepezil.

    It states: Our results suggest that treatment with donepezil improves cognition and hallucinations without increasing parkinsonian symptoms, and its sudden withdrawal is usually detrimental, producing acute cognitive and behavioural decline. Although recommencement on donepezil appears to reverse this deterioration we do not advise its abrupt discontinuation in this population.

    http://apt.rcpsych.org/cgi/content/full/8/2/89

    The above article appeared in Advances in Psychiatric Treatment (2002) 8: 89-96, (Royal College of Psychiatrists). It is an interesting summary of treatments and related issues.

    http://www.haringey.nhs.uk/about_us...lcholinesterase_inhibitors_for_alzheimers.pdf

    This PDF from Haringey NHS outlines the responsibililities of specialists and GP. One note is especially interesting, under Specialist Clinician Responsibility - step 9:

    If, on stopping the treatmentany accelerated deterioration occurs in cognitive function, global function of behaviour condition, a clinical decision will be taken as to whether to restart.

    Pity it does not give more specifics on what factors should inform that decision to restart. The bits on how the high prescription costs are documented are also interesting.

    The psychiatrist's comments that this was "the disease progressing". Hmmmm...my husband is an insulin-dependent diabetic, if he did not have access to insulin he would go into a coma - would that be "the disease progressing"?

    In some ways, it doesn't surprise me that there aren't a huge numbers of controlled studies done so far in the effects of withdrawing medication. It could be an ethical minefield - take informed consent in the first place. And how many people would be altruistic enough to volunteer for such a study, especially if they could not be sure that any degradation could be reversed?

    I hope this information is of some use.

    Take care,

    Sandy
     
  3. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Dear Sandy

    Thank you so much for taking the time to find the info for me it makes interesting reading.

    I have to try my best for Mum and without such facts it is very hard to make an a case for her.

    Kathleen
    xx
     
  4. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Dear Sandy. Thanks so much for these links. One of them has answered one of my main concerns.
    Mum complains of a constant head cold and related headache. I am convinced that this began when Aricept was upped to 10mg, and have been trying to ask the Clinic about this, with little success. They have so far tended to be a little vague, and surprised that these symptoms are happening, never having come across it. Yet it states in this link that common cold can be a side effect. Of course, I realise that they are probably concerned about her stopping them, as am I, but I do wonder if it's fair to have her feeling constantly low due to cold (she doesn't have a cold, but does have the symptoms, if you know what I mean). When I mentioned it again to the Dr, she asked MUM if she wanted to stop taking Aricept! Mum didn't know she was taking it in the first place .... Anyway, any ifo on stopping these medications is of great interst.
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Dear Lulu

    I would think very carefully before stopping the drug unless it is changed to another type, the deterioration is very scary.

    For example I have asked Mum the same question for the last three weeks:
    What is your favourite flower, always a rose when well and up to four weeks ago.
    Week one answer "Like that one" {pointing to a rose on the tablecloth}
    Week two answer "It is red"
    Today's answer "railway" {pointing to a carnation"

    See what I mean about the speech going. She answers with one or two words only and those words are not in any way connected to the answer needed, and more than three words together are a mix of all kinds of words that make no sense.
    Three weeks ago Mum was struggling to find the "right" word, today, she seems not to know what she is saying at all, but at least is relaxed about it.

    I fear we are on the slippery slope to nowhere, and I am dreading the future more than ever before.

    Kathleen
    xx
     
  6. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thanks Kathleen. How I wish I could say something to ease your situation ...
    Yes, I will think very carefully. Perhaps if the Drs would just discuss things a little more ....Take care.
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Kathleen

    it is a difficult path we are all on. There's no deviating, but we can try to alleviate things a bit.

    For instance, Mum is losing her speech. Can't stop that, but she is trying to communicate. That's a positive.

    You just have to learn a new language, something that is particular to her.

    That will be an evolving thing, but it helps us all to keep the [any] conversation going.

    I know it is awfully difficult!

    Best wishes
     
  8. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Thanks Bruce and Lulu

    I know it is another hurdle to overcome, but I can honestly say I will do anything for Mum as she has always been, along with my Dad, a rock to me throughout my life.

    I did understand her new "language" and it will be possible to have good times ahead with her, and some not so good too.

    One of the carers today asked how I am coping with the change in her, and I suppose although I know the AD is going to get her in the end, as she now seems to be completely in its grip, as long as she is not distressed or struggling to find the right words any more, it has to be a positive thing.

    I always try to look at the funny or bright side of any situation and that helps me enormously, as I tend to have a weird sense of humour at the best of times.

    What I can never allow myself to do is look back on how things used to be or ahead too far in what is to come, if I do that I know I will fall apart.

    Mum used to say "never ask why or say if only" in a bad situation, "just accept it and do the best you can to get through it" and I am trying to do just that.

    Thank you for your support, it is much needed at the moment.

    Kathleen
    xx
     
  9. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Kathleen,

    I just wanted to add my support too. I agree with not looking too far back or forward and I think a sense of humour, particularly a wierd one, is very helpful in these times.

    My Dad was always one to dismiss 'if only-ing'. My Mum would be the one to dream about some might-have-been, if only... and he would say, "If only my Aunt had b***s, she'd be my Uncle"! (It was one of the rare times I'd hear him use a 'swear' word.)

    In the same way that your Mum's saying is helping you now, I can often hear my Dad's sayings and remember the way he'd cheer up my Mum when she was down, and that helps me to try to get a smile from him now.

    All the best,
     
  10. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Lulu
    please think well before stopping the Aricept.
    Last time Peg had dropped down on her memory test, and the consultant said he would not stop the tablets because there is no going back.
    I do wonder some times when our loved ones develop aches and pains whether the are all in the mind,part of this lousy disease.
    Looking forward or looking back??
    Everyone by now knows my thinking,Day by day.
    I give my Peg everything that I can to try and make her happy,not that she asks for much.
    The only constant request is "to go to the seaside",the last time was a disaster,but I will risk it again to give her some pleasure.
    We have had a run of a few days when she has been with me, and it has been wonderful to have my Peg back if only for a short time.
    Who knows what tomorrow will bring,lets get through the night first.
    Norman
     
  11. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hi Hazel

    Thank you, I appreciate your support very much.

    I may be 51, married with 4 daughters myself,but I suppose I am still partly the child trying to do what Mum and Dad told me,....well, most of the time anyway.

    Kathleen
    xx
     
  12. nigel

    nigel Registered User

    Oct 29, 2005
    6
    Anti Alzheimers Drugs

    Hi Kathleen,

    If you do a search on the internet using the the word "galantamine"
    I think you will find a host of information with regards this drug.

    I did this when my Mum was prescribed Aricept, I got loads of info, re: benefits, side effects etc. Mum is due to go for a test at the end of this month, to see if the drug is still having any effect, if she scores 12 or below, they will take her of the drug, I have an open mind as to whether the drug is of any benefit to Mum anyway.

    I am very sorry to hear that your Mum is getting worse.

    Regards

    Nigel

    p.s. Thanks for taking the time, to reply to my last post
     
  13. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Nigel

    I found the links Sandy gave on this post very useful and quite scary, I would never have found them on my own.

    Regarding your Mum, please make sure that they explain fully why she is being taken off them and exactly what to expect, don't allow yourself to be fobbed off as we have been.

    We were never given any information, and if we had known the risk for her would have fought tooth and nail for her to stay on it.

    I would argue strongly for your Mum that although the Aricept may not be benefitting her, it is not doing any harm either, so why take the risk of another sufferer going into a rapid decline.

    AD sufferers are still human beings with the same rights to medical help as the rest of us, so fight her corner all the way.

    If my post about Mum's experience can stop this happening to anyone else at least some good will come from it.

    Kathleen
    xx
     
  14. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Kathleen,
    'Fobbed off' is exactly how I felt when the consultant phoned me with his cold and clinical decision to take my husband off Aricept (he claimed that it had caused a slow pulse, but my husband had never shown any signs of being dizzy or unwell). I mentioned my fears, but I was 'fobbed off': "rapid decline is just in the over-anxious minds of relatives / your husband doesn't need you to fight for him: we (medical staff) are not against him / no point in trying anything else, you might just like to perhaps invest in some Gingko Biloba ......"

    This was 10 weeks ago, and the results have been more scary than I could have imagined: my husband is almost unable to understand what is being said to him, or follow instructions, he is mostly unable to communicate, he is completely unable to take care of himself, struggles climbing stairs, unable to get into a car (therefore now housebound!), almost completely incontinent - - -

    I was 'fobbed off' about the Aricept, and also about alternatives, but I have managed to convince the consultant to write out a prescription for Memantine (Ebixa), which we started a week ago. We are on a very low starting dose, but already we (not only myself!) have noticed a slight improvement in communication and mobility. I pray that it is not just a fluke, and that perhaps it will get a little better still as we increase the dose over the next 3 weeks.

    I just wish there was a law that forced every healthcare person (from Consultant to Social Services Care Worker, Nursing Staff, paid Carers, GPs .....and of course the big bods at NICE) to experience what it is like to try and care for a relative with this awful disease. Perhaps then, the Consultant wouldn't have just announced so coldly that "it is time you looked at alternative care arrangements for your husband". I know I am bit vulnerable and touchy right now, but am I really just supposed to 'get rid' of my husband because caring for him at home has become difficult???

    Arrrgh - don't feel in a Sunday-morning mood!
     
  15. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Nan and Kathleen,

    Nan makes a very important point about the use of Exbixa (generically known as memantine). Aricept, Exelon and Reminyl are all licensed for treatment of mild to moderate AD. I believe Ebixa is licensed for moderate to severe AD, but guidelines for its use have not yet been issued by NICE. Ebixa works on an different bit of brain biochemistry than drugs like Aricept.

    The is a factsheet on this : http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm

    Last night I read through the Society's submission to NICE on drug treatments for AD. It is a 61 page pdf, but is really well-written and makes a number of excellent points regarding the presciption of drugs for AD:

    http://www.alzheimers.org.uk/News_a...ty submssion to Nice review of drugs 2004.pdf

    Based on the discussions we have been having on this thread, I would recommend looking at the information on later stages beginning on page 23.

    One of the most disturbing things that I have noticed in reading various documents, is the difficulty/need to justify drug therapy in economic terms, especially for the later stages of AD. The economic models for early/mid stage seem to be based on the cost of the drugs compared to the cost of care.

    The issues in the later stages seem to have more to do with maintaining basic skills, such as language and the ability to feed oneself. Maybe I'm missing something here, but preserving these skills as long as possible must make it more likely that the person with AD will be able to comminucate (pain, thirst, hunger) and act with some independence, and therefore be more comfortable and healthier than they would be without those skills.

    Kathleen, you are doing the best job you can in looking after your mother's interests. None of us can say what is best to do next in this case. But it would be interesting to mention Ebixa to her psychiatrist and see what reaction (and more importantly what justification for that reaction) you get.

    Take care,

    Sandy
     

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