How Safe Is Seroquel?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tressa, Dec 19, 2005.

  1. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    I am having another major dilemna.

    Mum is going out on her own to the local shop more frequently and has started to go around 4.30/5pm when it is dark, she buys alot of rubbish and one one occasion forgot to pay. Her Care Manager feels that she is very agitated and again has suggested Seroquel. On the previous occasion that it was suggested I refused because I looked into the drug and read horror stories about it and felt that the risk of giving the drug was higher than what it was supposed to help. This time I reluctantly agreed to try one 25mg tablet a day, just to try and take some of mums agitation away during the day, (she is fine when I am there).

    The problem is I have again looked on the internet about this drug and there is more up to date information on it and its even scarier than ever!! The drug company itself quotes on their own website that this drug is not approved for the treatment of elderly people with Dementia and that they are at an increased risk of death. So why I ask are doctors prescribing this drug for elderly patients with dementia????

    I dont know what to do, it was me who had the last say on this decision to start the drugs and now I am changing my mind which is going to make alot of people angry, i.e family, doctors and Social Services. I dont feel I am in a position to play with my mums life here, my partner says trust the doctors, but doctors get it wrong sometimes, we aren't talking some small side effect here, we are talking death here. I read one of the fact sheets on this website and they dont agree with giving these type of drugs so again I ask, who is making the decision to use these drugs to treat Alzheimers patients? If I dont go with the drugs there isn't an alternative, mum stays agitated and then they talk about care homes and I dont want that for her either.

    Can anyone advise or does anyone have experiences of this drug and any ideas how I stand up to the 'professionals' on this one?

    Thanks in advance for any help or advice given.


  2. Meldrew

    Meldrew Registered User

    Apr 28, 2003

    Hello Tressa
    I'm sorry to learn of the difficulties that your Mum experiences and the concern that this causes to you.

    The Committee on Safety of Medicines (CSM), in March 2004, stated and informed prescribers,

    'The CSM has advised that there is clear evidence of an increased risk of stroke in elderly patients with dementia who are treated with risperidone or olanzapine. The magnitude of this risk is sufficient to outweigh likely benefits in the treatment of behavioural disturbances associated with dementia and is a cause for concern in any patient with a high baseline risk of stroke.'

    'Prescribing advice
     CSM has advised that risperidone or olanzapine should not be used for the
    treatment of behavioural symptoms of dementia.
     Use of risperidone for the management of acute psychotic conditions in
    elderly patients who also have dementia should be limited to short-term and
    should be under specialist advice (olanzapine is not licensed for
    management of acute psychoses).
     Prescribers should consider carefully the risk of cerebrovascular events
    before treating any patient with a previous history of stroke or transient
    ischaemic attack. Consideration should also be given to other risk factors for
    cerebrovascular disease including hypertension, diabetes, current smoking
    and atrial fibrillation.'

    Whlist, the CSM did not address other atypical anti-psychotic drugs by name (the research had only looked at risperidone and olanzapine) they did go on to say:
    'Although there is presently insufficient evidence to include other antipsychotics in these recommendations, prescribers should bear in mind that a risk of stroke cannot be excluded, pending the availability of further evidence. Studies to investigate this are being initiated.'


    If any of these drugs are prescribed to a person with dementia with Lewy bodies, then the greatest caution and monitoring should be exercised.

    A further reason not to use Seroquel is because further research suggests that it can accelerate cognitive decline in people with dementia.

    In July 2005 the MCA informed prescribers
    'More recently concerns have arisen that patients receiving risperidone and olanzapine in dementia were at an increased risk of stroke compared with patients receiving placebo (dummy pill) and that the balance of risks and benefits was considered to be unfavourable in the dementia population. Atypical antipsychotics are not authorised for the treatment of dementia related psychosis and/or behaviour disturbances. Prescribers were informed of this risk and advised to review the treatment of all patients receiving atypical antipsychotics in dementia as the risk of stroke for other atypical antipsychotics could not be excluded'

    The Royal College of Psychiatrists has some useful guidance on the use of anti-psychotics: as well as some suggestions on the use of non-pharmacological management of symptoms:

    I hope that this helps in adding weight to your argument against your mother being prescribed this drug.
  3. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    To be or not to be

    Thanks Meldrew for all those links. The question of drugs has always baffled me. The talk I attended once on 'drugs or no drugs' wasn't about this or that but addressed the fact that with drugs, you risk the side-effects; without drugs, you risk the disease. Devil and Deep sea sort of thing.

    Other posters here have expressed their fears about withdrawal of dementia drugs and this has confused me even more in view of the fact that most of these drugs have severe side effects. I also wondered if drugs were so effective, why were doctors withdrawing them ? And truly, how much is actually revealed by the drug companies ?

    Tressa, if your mum is only agitated, I think lesser measures might be more appropriate than when she's aggressive which calls for more drastic measures till things cool down. Just as in your case, my mum is okay as long as I am around, so I am her best drug. I changed my schedules for a while to be able to stay home during the sundowning phase when she was extremely agitated, bordering on the aggressive. I found being there, putting my arm around her, reassuring her, distracting gently, taking her out for a short drive and such things did work.

    In the past, I would get upset about things that mum would do between 4 and 6 p.m. But I learnt to look at it differently. To me, it seems like it is our need to see certain behaviours as problem behaviours which need to be taken care of with drugs. Now, when she has torn off the cushion covers, or made some strange concoctions or has all my files in the bin, I don't react in the way I used to. A different perspective helps too.

    Hope you will be able to make a decision you are comfortable with.
  4. KarenC

    KarenC Registered User

    Jun 2, 2005
    Los Angeles, USA
    When news came out a few months ago about this association of Seroquel with increased risk of stroke, the psychiatry department prescribing my mom's medications did make a point of calling to let me know about this and see if I wanted her to continue to take this drug. They did not try to talk me out of using it, just wanted me to be aware of the news.

    In my case it was an easy decision. The Seroquel has made a big improvement in Mom's mood and behavior, without obvious ill effects such as Haldol had. Her condition is such (in hospice care in an Alzheimer's home) that anything that makes her life more comfortable is worth while even if there is a risk of it shortening her life.

    With your mother, who is at an earlier stage and less affected, I can see that it is a harder call to make. I've no real advice for you. You are correct of course that doctors sometimes get it wrong. It is also the case that many drugs are used "off label" (i.e., for conditions other than what the manufacturer advertises them for) with success and to good effect. It's hard to weigh the pros and cons -- can any other practical measures be used to control you mother's "Sundowning" (problems in the late afternoon) behavior? how likely is she to cause herself or you real problems through this behavior? is she likely to need to go to a care home sooner due to it? etc.?

    There just aren't any good decisions with this disease, sometimes unfortunately just a choice of evils.

  5. lou lou

    lou lou Registered User

    Nov 9, 2005
    Dear Tressa,

    Trust your instincts and inform yourself with all the links Meldrew has suggested.

    Maybe I'm just becoming cynical but having watched awestruck as a medical team with synchronised platitudes calmly wished to despatch my mother to her inevitable demise has left me more than a little jaded.

    What do elderly do and how badly are they treated when they don't have thoughtful and caring relatives like youself to fight for them.

    Much Love

    Lou Lou
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Tressa, I would also agree that your Mum is "sundowning", my own Mum did this a lot. If there is any way you can channel this energy and intent into safer pastimes at this time of day it could help. I often got Mum involved with cleaning or making dinner, (thank the lord for packet cheesecakes!!) OK it made it much harder for us all, but it saved the struggles of trudging up and down the road as she was intent on going home to a house owned 40 years ago, or if it was dark and the weather foul, the awful nightmare of having to do a lockdown and face the aggro it often caused. It is very difficult to advise on drugs, what suits one, wont another etc. All you can do is try and you are already doing that. As long as all you do is done with love and for her wllbeing, no one could do more. Hope tomorrow is better, love She. XX
  7. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    Thank you everyone.

    I had given mum one tablet and it gave her a dizzy spell so her care manager said it was best not to go ahead with the tablets. I had by this stage decided not to give her anymore. I now have to get an appointment with mums consultant to discuss the future. I dont know what the future holds, I just know that its never going to get better, just worse.

    I just cant believe that doctors are prescribing a tablet like this when the drug company themselves dont advise it. Do AD patients not have the same basic human rights as everyone else???

    Sorry for rambling, it just makes me so angry. Thanks again to everyone.

    I wish everyone on TP a very peaceful Christmas and a better New Year. God knows you all deserve it.



  8. susie

    susie Registered User

    Nov 30, 2003
    Hello Tressa
    My husband was becoming vewry agitated and agressive towards me and Seroquel was prescribed by the respite ward that he goes into every 6 weeks. I too read all the info about Seroquel and was concerned about the advice to let the doctor know if you have AD. The ward monitored him for the period he was in respite and I was given advice about any possible side effects. He is on 2 25mg tablets at tea time and the result is a calmer and much less aggressive husband. He feels better about himself and our relationship has had a chance to get back on track. I sometimes worry about what might happen but then there are so many unknowns with this illness that sometimes you have to balance risk against a more comfortable situation at home.This is my personal view and others may not agree but you have to find what works for you and you are happy with.
    I had tried all the usual trying to keep his life calm and ordered but the
    stress involved in doing that took it's toll on me so medication has been a godsend. If anything did happen suddenly, at least my memories would be of a happier time rather than of his aggression.It has certainly helped him in coping with a prostate operation and staying in a general ward.
  9. KarenC

    KarenC Registered User

    Jun 2, 2005
    Los Angeles, USA
    I agree. Different people react differently to the same drug. Seroquel seems to be worth the risks for Susie's husband and my mom. If your mother had a bad reaction to it, and you were not comfortable with it anyway, I think you made the best choice in not pursuing the experiment. Unfortunately this is a disease with no one type of treatment that works for everyone. Good for you, for sticking up for what you think best for you mother!


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